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Amtram
08-13-12, 05:54 PM
So, I fell down and bumped my head, and since it looked kind of awful from the outside, my doctor sent me for a CT scan. It showed that I hadn't suffered a concussion, but what it did find is that I have a very large intraosseous meningioma. I asked her where it was, and essentially, it's been pressing on my left frontal lobe. . .

This is a cancerous tumor, but it's not really all that big a deal. It's extraordinarily rare, which is no surprise, because I'm not going to go around getting just any old common tumor, not me! However, it's slow-growing, non-aggressive, and usually requires no treatment beyond surgery. And it's not in my brain, but in the bone.

I knew all this as soon as she told me the name, so when she told me where it was, I got all excited and asked, "Whaddaya think? Maybe if I get this thing taken out, some of my ADD will go away?" She laughed - I don't know if she's ever gotten that kind of a response to "you have a tumor."

I can't wait to see the films, and whatever neurosurgeon I see is probably going to want to treat me really quickly so he doesn't have to put up with all my questions. Heh. I really am interested in seeing if I notice any cognitive or emotional changes after surgery, and the only thing that I'm worried about is paying for it. Stoopid insurance company.

I probably won't be getting my first appointment right away, but I thought it would be interesting for people here to read occasional progress reports in case there really seems to be a cause and effect between this tumor and my executive function!

ginniebean
08-13-12, 07:03 PM
Holy crap, I thought the world would cave when I was told I had a pituitary adenoma.. I'd be freaking out.. so.. maybe you'll have amazing super brain after surgery. wow.

CheekyMonkey
08-13-12, 07:15 PM
That is crazy. Are you going to be okay?! :eek:

Amtram
08-13-12, 08:37 PM
Yeah. This is not life-threatening even though I have to get it removed by a neurosurgeon. It does put quite a crimp in my plans to go back to school, though. I'll just be learning something different.

Rebelyell
08-13-12, 08:50 PM
Well I wish you well,it seems toms river has had a big cancer cluster w kids and people from what Ive read.Its either the damn nuklear reactors orsome company dumped chemicals in the water supply/tainted wells. Thats sounds like something that Id say maybe My adhd would go away lol

eclectic beagle
08-13-12, 08:55 PM
Good luck with the tumor issue, you said it is not in the brain, but on the bone and pressing on the frontal lobe, so it could be worse!

As for me, I used to fantasize about having a brain tumor when I was a teenager, I guess because subconsciously I thought one simple surgery would cure all of my ills. I even made my own brain tumor sock puppets, but that's an entirely separate story.

Anyway, best of luck!

Rebelyell
08-13-12, 09:01 PM
my parents always jokingly said I was due for a lobotomy any day now:D

danelady
08-13-12, 09:06 PM
Well,you don't sound too worried about it,but I hope that everything goes ok for you.

Ms. Mango
08-13-12, 10:20 PM
Wow! I hope you'll have a good outcome and your reports will be interesting and nothing more!

anonymouslyadd
08-13-12, 10:29 PM
:grouphug:

Fortune
08-13-12, 10:31 PM
Best of wishes, Amtram. Glad it's fairly benign as such things go.

Also, I find your geekery in response to the diagnosis to be amusing...and easy to identify with. :D

CheekyMonkey
08-13-12, 11:17 PM
Yeah. This is not life-threatening even though I have to get it removed by a neurosurgeon. It does put quite a crimp in my plans to go back to school, though. I'll just be learning something different.

That's good that it is a fairly safe procedure and outcome.

How long is recovery?

purpleToes
08-14-12, 03:35 AM
What a strange thing to have happen to you. Best wishes for everything to go well, Amtram!

Amtram
08-14-12, 07:00 AM
Well I wish you well,it seems toms river has had a big cancer cluster w kids and people from what Ive read.Its either the damn nuklear reactors orsome company dumped chemicals in the water supply/tainted wells. Thats sounds like something that Id say maybe My adhd would go away lol

We had heard that, too, but as it turns out it was something we didn't have to worry about. Ciba-Geigy diverted benzene into the water table, and it got into the well water downstream. The cancers occurred in children whose mothers drank the well water nearly exclusively. Not a problem if you don't have well water or drink bottled, and the adult cancer rate is about equal for NJ as a whole. (We all know that living in NJ causes cancer. . .)

Abi
08-14-12, 07:27 AM
All the best Amtram :grouphug:

Lunacie
08-14-12, 09:30 AM
So they're gonna poke around inside your head and take out all that wet sawdust, eh?

That's what my dad and bro used to tell me was inside my head. Guess they could tell I was different long before ADHD was very well known.

If this helps you, I can see a whole bunch of us asking for brain scans to see if surgery will help us too. :giggle:

(((Amtram)))

meadd823
08-14-12, 04:47 PM
I can't wait to see the films, and whatever neurosurgeon I see is probably going to want to treat me really quickly so he doesn't have to put up with all my questions. Heh. I really am interested in seeing if I notice any cognitive or emotional changes after surgery, and the only thing that I'm worried about is paying for it. Stoopid insurance company.


Your insurance doesn't cover tumors, bones or those that grow in the brain - What is the sense of having insurance if they don't pay for things when you need them.

My luck the tumor would be the only working part of my brain and removing it would probably decrease my IQ but that is me - Any way I agree it will be interesting to see if removing your tumor has any effect on your ADHD symptoms.

Rebelyell
08-14-12, 04:58 PM
I'll keep you in my prayers nd thoughts,yeh isnt tht the truth nj is cancer alley,that word still scares me being I lost both folks from it.

Drewbacca
08-14-12, 05:07 PM
Wishing you the best and a quick recovery!

mildadhd
08-15-12, 06:28 AM
Amtram,

Don't be silly you can't cure ADHD.

Hope your OK.

Love Consider

Dizfriz
08-15-12, 09:54 AM
Amtram,

Keep us in touch with this, we care.

Dizfriz

eclectic beagle
08-15-12, 12:21 PM
Amtram,

Don't be silly you can't cure ADHD.

Hope your OK.

Love Consider

But, you can cure medical mimics of ADHD, potentially.

mctavish23
08-15-12, 12:26 PM
Amtram,

Ditto on the Hugs and Best Wishes Stuff.

Will be thinking of you and putting you in my prayers.

tc

mctavish23

(Robert)

Luvmybully
08-15-12, 02:17 PM
Wow Amtram. Well that's a pretty crappy surprise to get from a Dr visit. :(

Will be thinking of you and praying for you too.

:grouphug:

Amtram
08-18-12, 12:29 PM
OK, I'm back from a weeklong tour of potential colleges for DD#2 and no real internet access, so here's some updates. . .

The doctor my GP recommended who is actually on my plan has not gotten back to me after two phone calls, so the timeline for any treatment is. . .nonexistent. We'll be working on that. I may see if I can harass my insurance company enough to let me get treated by the same neurosurgeon who treated the same thing in my mother. . .in Philadelphia. I'm not hanging all my hopes on that.

The typical presentation of intraosseous meningioma does not involve the dura (the membrane that covers and protects the surface of the brain) but the treatment often includes removal of a portion of the dura and grafting from another area to close the opening.

Depending on the type of tumor and its size, the area of the skull that is removed can be repaired with grafted bone, or may need metal plate or mesh. If this is the case, I am so going to take airplane trips once I have my get-out-of-TSA-free card! I haven't seen my own films, so I have no idea how extensive this thing has become.

Now, let me tell you a few of the things I've noticed, and why in retrospect I think they may be results of the pressure the tumor is causing. A little background as to why I didn't pay attention to them in the first place. . .First of all, some of them resemble ADD-like symptoms, and I dismissed them as a worsening of my ADD due to age/stress/medication. Secondly, I was on Cymbalta for my depression several years ago, and experienced similar mental dysfunction after a long period of using it, and attributed the cognitive difficulties to an earlier onset of the same result because I was taking it again for my depression. I have been off Cymbalta for almost two months now, and there has been no remission of these symptoms, so I'm thinkin' it's the tumor. . .

The thing that bothered me first was the tinnitus. I've always had it, usually didn't notice it. Slowly but surely, it has increased in volume and risen in pitch in my left ear. I'm not certain of the exact location of the tumor, but there is a slight swelling directly above and slightly to the front of my left ear that's unrelated to the area where I hit my head. My right ear is unaffected. If there is any tinnitus in my right, I don't notice it because it's overwhelmed by the noise in my left ear.

Headaches have been a constant with me. I'm a walking barometer. Incoming precipitation almost always triggers a pain in my sinuses. Over the last several months, despite drought in my area, I've been getting headaches more frequently, and they've been less responsive to painkillers. I'm taking a prescription level dose of naproxen to ease the pain in my arthritic shoulder, but the headaches continue to nag.

Now for the cognitive stuff. The biggie has been losing words. I mean, REALLY losing words. This was a difficulty that I had experienced with my earlier use of Cymbalta. Normally, when I'm lost at finding a word, it's been because so many other words are popping into my head vying for attention, and I've had to try to sort out which is the one I need. This has not been the case lately. They just haven’t been there. I stop in the middle of the sentence, and there’s just a blank. Nada. The complete silence is disconcerting. Once I took notice of this after realizing that stopping Cymbalta hadn’t made this go away, I realized that my mind is a lot quieter than usual, and not in a good way. (I still ruminate. . .) Turns out that expressive and/or responsive aphasia is a common symptom in meningiomas.

That makes sense if you think about it. . .the areas of the brain that control various aspects of communication and language comprehension are small and close to the center of the brain. Pressure from any area of the cerebrum could compress these areas and reduce your ability to understand or respond to written or spoken language, or lose syntactic fluency, or disable the connection between words and objects. Being at a loss for words is an alien experience for me, and very disconcerting.



I’ve always been a very good typist. In fact, when I was Recording Secretary for the Marching Band, I took minutes for all the meetings on my netbook, and had very few typing errors that needed correction. Over the last several months, my fingers have been going in the wrong places more and more frequently. I’m still moving them just as fast, but I think I’m getting a callus from the backspace key. Between losing my train of thought or searching for a word and hitting the wrong letters as I type, this is taking a lot longer than usual.



What I just discovered from taking notes on the college tour is that my already atrocious handwriting has taken a major hit as well. Looking at samples of what I wrote down this week and what I wrote several months ago, I see a striking difference between them. I had many WT(H) moments looking down at the paper, because there were not only a lot of wrong and malformed letters, but also things that were not even letters at all.



More to come later. . .now I need another cup of coffee!

ginniebean
08-18-12, 12:47 PM
Amtram,

I am sincerely hoping you get timely treatment and that the costs will be covered, for the life of me I cannot understand how something so serious would not be covered by insurance. It is boggling to me.

Amtram
08-18-12, 01:04 PM
I'm hoping that the Affordable Care Act will give me some more options, but I somehow doubt it.

BTW, I remembered something else that really bothered me while I was out on this trip. Normally, I am great with directions and maps, but I had a really bad problem with this on our last trip out to two schools in Philadelphia, so I made sure to cover this before we left. It was important that I be aware of the routes because DD#2 gets carsick so easily that she's no help at all with navigating.

I printed out large maps. I printed out Google directions with small maps. I printed out local maps and campus maps. I knew in advance which routes were going to be troublesome and changed the maps to keep myself off of them.

Despite this, I also had to turn on Navigation on my phone, and kept forgetting what the directions said within moments of looking at them. Normally, I can find my way again if I get a little lost simply by instinct. This trip, I absolutely could not make heads or tails of where I was, relative to even the most straightforward of maps. My sense of direction is seriously impaired, and I didn't even notice it coming on until I had to travel someplace new this month.

My short-term memory is worse than ever - this business of forgetting things I'd made a conscious effort to memorize and plan for, even while my Adderall was in effect, is something entirely new.

I'm attributing this to the pressure, but for now it's just something I have yet to find out from the doctor.

mildadhd
08-18-12, 05:53 PM
Interesting Amtram,

Your well informed in general.

Thanks for explaining.

I looked up everything you said.

And like you said it seems to make sense.


(You know I am not a professional.

and I could be out to lunch.)


The area you describe above you left ear is close to parts of the frontal lobe,

temporal lobe and the parietal lobe.


The higher pitch in your left ear could have something to do with neurons in certain parts of the primary auditory cortex that detect higher tones?


If the sound is closer to left side is the pitch higher?

If the sound is from the right side is the pitch lower in the left ear?

If the sound is coming from far away on the left side is the pitch lower?

If the sound is coming from far away on the right side is the pitch even lower in the left ear?


I also wondered if the change from your ADHD competing thoughts,

to no competing thoughts,

might have something to do with the low dose pain killers?

Does this happen when you don't take the pain killers?


Anyway I wouldn't normally discuss something so personal with most people.

I understand your curious nature to understand.


You know I could be out to lunch on these ideas.


I learned a lot by looking up the information you provided.


Hope things get better soon.


Love Consider.

Amtram
08-18-12, 10:39 PM
The high-pitched tone in my left ear never varies. When it first began to change, I thought it might be related to either the Cymbalta or the Adderall. I tried skipping the Adderall while I was on Cymbalta, and noticed no significant difference. I thought then that going off the Cymbalta might help, but the volume kept going up gradually. It could be pressure somewhere on my auditory nerves in the left ear, which seems like a more reasonable idea. My thought is that if an actual audio processing area of my brain was affected, I'd experience something in both ears, or perhaps begin having difficulty in hearing sounds or understanding them. It's on my list to ask the doctor. (The painkillers were started after the other medication changes, so they're not the problem. . .)

GBYR, I'm going to try to keep track of changes I notice before surgery and after. I spoke with my mother this afternoon, and not only is this the same type of tumor, but it's in roughly the same location as hers was. She remembers her symptoms as only physical, nothing cognitive, and I wasn't living with her at the time so I can't dispute that either way.

The other thing that just occurred to me is to ask my eye doctor about my eye pressure. It was high enough that my optician recommended a medical workup, and I assumed it was more likely Cymbalta than glaucoma. No glaucoma, thank goodness, but I should go for another checkup before and after surgery to see if discontinuing Cymbalta lowered the eye pressure, and if not, if the pressure goes down after surgery. I don't recall whether there was any significant difference between one eye and the other. Curiouser and curiouser!

mildadhd
08-19-12, 04:40 AM
The high-pitched tone in my left ear never varies. When it first began to change, I thought it might be related to either the Cymbalta or the Adderall. I tried skipping the Adderall while I was on Cymbalta, and noticed no significant difference. I thought then that going off the Cymbalta might help, but the volume kept going up gradually. It could be pressure somewhere on my auditory nerves in the left ear, which seems like a more reasonable idea. My thought is that if an actual audio processing area of my brain was affected, I'd experience something in both ears, or perhaps begin having difficulty in hearing sounds or understanding them. It's on my list to ask the doctor. (The painkillers were started after the other medication changes, so they're not the problem. . .)

GBYR, I'm going to try to keep track of changes I notice before surgery and after. I spoke with my mother this afternoon, and not only is this the same type of tumor, but it's in roughly the same location as hers was. She remembers her symptoms as only physical, nothing cognitive, and I wasn't living with her at the time so I can't dispute that either way.

The other thing that just occurred to me is to ask my eye doctor about my eye pressure. It was high enough that my optician recommended a medical workup, and I assumed it was more likely Cymbalta than glaucoma. No glaucoma, thank goodness, but I should go for another checkup before and after surgery to see if discontinuing Cymbalta lowered the eye pressure, and if not, if the pressure goes down after surgery. I don't recall whether there was any significant difference between one eye and the other. Curiouser and curiouser!

Amtram

Sure is interesting,

interested to your findings.

Your discussing parts of the brain I haven't even heard of til today.

Never thought of the "layers" between the skull and brain before,

or hearing pitches etc...


I am stuck on understanding the left and right hemispheres.(for a couple of years now)


Specifically is one hemisphere suppose to be dominant,

and the other not dominant?



With the idea ,

that if I preformed everything the exact same,

with both sides of my body.

Like learn to write left handed and right handed,

the same.

Reach for things both left and right hands together ....etc

Would one side of my brain still be dominate over the other side.

Or would they be more balanced in function overall?


Are we suppose to have a dominant side?

Or is the dominant side dominant,

because we use one side more,

and one side less?

I think I might be of topic.

mildadhd
08-19-12, 04:54 AM
I forgot...

I forgot again.

What was I going to say?

hmmmmm


I wonder what the difference would be,

if your health issue was on the right side?(instead of the left side?)

Would it make your ADHD worse?

I find my ADHD "less" when I am sick,

but I am thinking that is because there is less expectations.

When I am sick.

Again you know I could be out to lunch.

Slo-mo a-go-go
08-19-12, 07:11 AM
antram-

the thinking side of my brain thanks you so much for putting up all the detailed info surrounding your noggins newfound status and the resulting complexities, very intriguing

the feeling side of my brain sends you sympathy in having to deal with additional medical issues, but also medical costs and health insurance

have my fingers crossed for you, and wishing you good things, like maybe you were secretly born in canada and can apply for citizenship and then enjoy their affordable healthcare coverage!!

Unmanagable
08-19-12, 01:34 PM
Wishing you the best in healing and discovery. ((((Hugs))))

Amtram
08-19-12, 02:37 PM
Geronimoo, the whole left brain/right brain idea dates back to a time when we understood significantly less about the brain than we do today. There are so many parts of the brain that have highly specialized functions that have nothing to do with a simple two-sided brain model that we should really discard the whole left brain/right brain idea.

The reason I'm having some mild aphasia is that pressure is being put on specific language processing areas of my brain. I've talked before about Wernicke's area and Broca's area, and this (http://medical-dictionary.thefreedictionary.com/dysphasia) is a pretty good rundown on various types of aphasia (called dysphasia in the link.) Broca's area is close to the left frontal cortex. Wernicke's area is at the back of the left temporal lobe. So yes, there are language processing areas located in the left hemisphere, but they don't function in a vacuum. The language loop (http://thebrain.mcgill.ca/flash/i/i_10/i_10_cr/i_10_cr_lan/i_10_cr_lan.html) includes connections to areas that are outside the left cerebral hemisphere, so damage to language processing areas can interfere with other functions, and damage to areas that interact with language centers can interfere with language.

mildadhd
08-19-12, 03:50 PM
Geronimoo, the whole left brain/right brain idea dates back to a time when we understood significantly less about the brain than we do today. There are so many parts of the brain that have highly specialized functions that have nothing to do with a simple two-sided brain model that we should really discard the whole left brain/right brain idea.

The reason I'm having some mild aphasia is that pressure is being put on specific language processing areas of my brain. I've talked before about Wernicke's area and Broca's area, and this (http://medical-dictionary.thefreedictionary.com/dysphasia) is a pretty good rundown on various types of aphasia (called dysphasia in the link.) Broca's area is close to the left frontal cortex. Wernicke's area is at the back of the left temporal lobe. So yes, there are language processing areas located in the left hemisphere, but they don't function in a vacuum. The language loop (http://thebrain.mcgill.ca/flash/i/i_10/i_10_cr/i_10_cr_lan/i_10_cr_lan.html) includes connections to areas that are outside the left cerebral hemisphere, so damage to language processing areas can interfere with other functions, and damage to areas that interact with language centers can interfere with language.


Thanks for the discussion.

I mostly agree,

Some actions go straight back in the same hemisphere,

An example might be(?),

the Prefrontal to the Cerebellum,

then the Cerebellum to the prefrontal cortex.

(I am missing other brain parts in this example)


But "crossing over" between hemispheres is important in some brain functions.

There does seem to be a relationship between dominant hand writting and certain "explicit" functions.

I need to make a signature that says,

I could be out to lunch.


It just find it easier to focus on what I don't know?

But I am learning lots of stuff.




.

mildadhd
08-19-12, 03:58 PM
If I could only find out if people with ADHD,

who are left hand dominant.

Had a underdeveloped left prefrontal cortex,

or a underdeveloped right prefrontal cortex?

It would eliminate a bunch of questions.

LynneC
08-21-12, 12:59 PM
The doctor my GP recommended who is actually on my plan has not gotten back to me after two phone calls, so the timeline for any treatment is. . .nonexistent. We'll be working on that. I may see if I can harass my insurance company enough to let me get treated by the same neurosurgeon who treated the same thing in my mother. . .in Philadelphia. I'm not hanging all my hopes on that.
Amtram, can you ask your GP to make an appointment with the specialist for you? May help to get the ball rolling...

Amtram
08-21-12, 01:20 PM
I actually looked up some reviews on a different practice, and the doctors there were recommended on several different patient response sites. Not only were they quick to schedule an appointment, but they also got in touch with my GP to prescribe an MRI beforehand so they have it in time to review before I get there. I'm hoping the radiologist will let me put my images on a USB stick. I wanna look at my brain!

Lunacie
08-21-12, 01:25 PM
I actually looked up some reviews on a different practice, and the doctors there were recommended on several different patient response sites. Not only were they quick to schedule an appointment, but they also got in touch with my GP to prescribe an MRI beforehand so they have it in time to review before I get there. I'm hoping the radiologist will let me put my images on a USB stick. I wanna look at my brain!

Good job, you!

Be sure and let your MD know that the specialist he recommended dropped the ball

so he can recommend someone more reliable for the next patient in need.

Flory
08-21-12, 02:54 PM
wishing you a speedy recovery..love that the first thing you asked was if it'd make the ADD better :D

Conman
08-22-12, 12:45 AM
kinda late, but good luck! im an aspiring neurosurgeon so lemme know about the procedure and whatnot. i wonder how people would feel about a neurosurgeon with ADHD?

considering this intraosseous meningioma is not in your brain or your skullbone then it's part of the meninges (dura mater, arachnoid, and pia mater). this area is protecting your CNS, so i am curious how this goes

Amtram
08-22-12, 02:57 PM
Me, too!

I just picked up an 8gig USB drive - I'm hoping I can get copies of my MRI from either the radiologist or the neurosurgeon. I don't think I'd be able to handle pictures of the actual procedure, but I'd really like to see what my brain looks like in black and white!

mildadhd
08-22-12, 03:59 PM
Amtram,

Genes can point to a medication treatment.

Genes can also be able to point to environmental factors.

Example:

Oxytocin gene is strongly related to the natural attachment process,

and is a gene associated with ADHD.

Lunacie
08-22-12, 05:53 PM
Amtram,

Genes can point to a medication treatment.

Genes can also be able to point to environmental factors.

Example:

Oxytocin gene is strongly related to the natural attachment process,

and is a gene associated with ADHD.

I think research may be headed in that direction, but we're just not there yet.

mildadhd
08-22-12, 05:57 PM
I think research may be headed in that direction, but we're just not there yet.

Thanks Lunacie,

What is weird about the topic is that Dr.Mate and many other researchers where there since at least 1999.

Look at all the bad things people have said to me about Mate.

Especially the in house specialists.

Not one appology to meet my 1000's of appologies.

This place is bad for my health.

Enough respect in your stance about fish oils.

Lunacie
08-22-12, 06:36 PM
Thanks Lunacie,

What is weird about the topic is that Dr.Mate and many other researchers where there since at least 1999.

Look at all the bad things people have said to me about Mate.

Especially the in house specialists.

Not one appology to meet my 1000's of appologies.

This place is bad for my health.

Enough respect in your stance about fish oils.



Fish oil was not valued or respected as a treatment for ADHD when I first joined this forum.

All I had was my own anectodatal experience. It didn't carry much weight.

Research is being done on epigenetics - but we are not there yet. Give it some time.

As far as I know, the study of genetics and epigenetics is not going to help Amtram at.this.time.

Amtram
08-23-12, 09:46 PM
Yeah, even if it weren't for the fact that my tumor represents only 1% of all meningiomas in the world, and is therefore extraordinarily difficult to study. They can have my brain and give it a look-see, but only when I'm done with it.

CheekyMonkey
08-24-12, 01:18 AM
Yeah, even if it weren't for the fact that my tumor represents only 1% of all meningiomas in the world, and is therefore extraordinarily difficult to study. They can have my brain and give it a look-see, but only when I'm done with it.

AW man. You mean you can't just donate a little bit now? Surely you don't need your WHOLE brain! :lol:


I'm just glad you will be ok. :)

Drewbacca
08-24-12, 12:53 PM
I probably won't be getting my first appointment right away, but I thought it would be interesting for people here to read occasional progress reports in case there really seems to be a cause and effect between this tumor and my executive function!

On a semi related note, you may find the following interview interesting:
http://www.npr.org/2011/05/31/136495499/incognito-whats-hiding-in-the-unconscious-mind

eclectic beagle
08-24-12, 06:39 PM
I've looked up this subject in the past, and from what I remember brain tumors can dampen cognitive function, or at least particular portions depending on the placement. You said it isn't directly on the brain, though. So I'm not sure about your situation.

My medical knowledge seemed to greatly impress my psychiatrist years ago, but I've forgotten much of it, I'd have to "bone up" on those subjects.

Amtram
08-24-12, 08:53 PM
Ugh, that was bad!

I've been staring at my CT and MRI scans, and the information I was given about the location was, well, a little off! This thing is actually in the back of my head, left of center, and it's pretty huge. Big enough that I thought I just had a funny-shaped head. Knowing now where the borders are, I can feel all around it and detect the edges.

It's very curious that I didn't notice problems before, because there's some noticeable asymmetry between the two halves of my brain at the site.

Seeing the neurosurgeon on Wednesday - I have to save up my questions and be patient until then. . .

Lunacie
08-24-12, 09:30 PM
Ugh, that was bad!

I've been staring at my CT and MRI scans, and the information I was given about the location was, well, a little off! This thing is actually in the back of my head, left of center, and it's pretty huge. Big enough that I thought I just had a funny-shaped head. Knowing now where the borders are, I can feel all around it and detect the edges.

It's very curious that I didn't notice problems before, because there's some noticeable asymmetry between the two halves of my brain at the site.

Seeing the neurosurgeon on Wednesday - I have to save up my questions and be patient until then. . .

Oh man ... the only thing worse than being sick is being ... patient!

Amtram
08-25-12, 04:21 PM
So, for those of you who are curious, here's some pics:

http://i820.photobucket.com/albums/zz128/Amtram/Top-view.jpg
http://i820.photobucket.com/albums/zz128/Amtram/Back-View.jpg
http://i820.photobucket.com/albums/zz128/Amtram/Side-view.jpg

Really, truly, I just thought my head was shaped like that!!

Lunacie
08-25-12, 05:29 PM
Thank you for sharing the pics.

R = right, L = Left, A = anterior / front, and P = posterior / back.

Those were easy to figure out. Took me a minute to switch views and figure that

F = foot (instead of front) and therefore H = head (bottom and top).

My hubby had a oddly shaped head which wasn't apparent except when he got his hair cut

really short. That's been so long ago I don't remember anything about the shape of it now.

Blueranne
08-25-12, 05:48 PM
I just read this thread for the first time and wanted to pass along my wishes and hope of health for you, Amtram. I will be following your updates anxiously.

:grouphug:

purpleToes
08-28-12, 04:31 AM
Amtram, wow, those pictures are dramatic. I was curious, so thank you for sharing them.

Amtram
08-28-12, 01:01 PM
There was no way I could post all of them, so I picked the ones that were the easiest to "get." What's interesting is that when my GP described them to me, she was flustered enough that she misstated the location of the tumor, and because of that, I started wondering about connections between localized pressure and cognitive/physical effects.

There is, despite the tumor being in the occipital lobe area instead of the temporal lobe area as I'd assumed, pressure in the left temporal lobe near Broca's area, which I'm still guessing is behind some of my expressive aphasia. The left parietal lobe is deformed as well, although I don't think you see that too well in these images.

The occipital lobe has a lot to do with functional vision, and except for a couple of small issues, I don't notice much of a change that way. I'm having a bit of difficulty with my visual focus wandering a bit down and to the left - reading is a smidge harder than usual, and it takes more effort to look into my rearview mirror while driving. These things, though, could be a disruption to the optic muscles from the pressure rather than any actual visual effect.

10AM tomorrow I see the neurosurgeon. I hope he has the time and patience to deal with me!

silivrentoliel
08-28-12, 01:05 PM
damn... =/ good luck tomorrow!

Conman
08-29-12, 02:47 PM
goodluck! i want to hear about the procedure, as in if you can, it doesnt matter, ask him before or after the surgery what he's going do. im dyings to know.

also about the pictures, dont take this the wrong way but SWEET JESUS!

Amtram
08-29-12, 03:34 PM
Well, I'm currently on hold trying to insurance wrangle MRI with contrast, MRA, and MRV, because there might be more involved than just the bone. Keep your fingers crossed for me, or whatever you do. . .

Lunacie
08-29-12, 04:21 PM
Sending positive energies your way ... and crossing my toes and my eyes!

Amtram
08-30-12, 03:47 PM
OK, one thing I want to pass on to all of you. . .you know how we're always supposed to be doing these self-evaluations for lumps and stuff? During my exam, I discovered that I had lost some abilities I hadn't even thought about.

The doctor had me do the "drunk walk," where you walk heel to toe along a straight line. I've had better balance when I was actually drunk than I did in the doctor's office.

He had me close my eyes and hold my arms straight out in front. When I opened them, my right arm was way up and to the right.

He had me close one eye, and with the index finger on the side of the uncovered eye, touch his finger and my nose, back and forth. On the right, I kept missing, and when he said to speed up, I couldn't.

DO THESE THINGS AT HOME!!! Such a simple way to keep up to date on whether everything's working the way it's supposed to. . .

Amtram
09-10-12, 08:28 PM
I went for another set of MRIs, and I'm off to the doctor tomorrow to see what else is up. Of course, I had to compare them to normal ones, and look what I found on the net!!! http://www.med.harvard.edu/AANLIB/home.html

It is a very cool atlas of the brain using MRIs, with labels and arrows so you can tell what you're looking at. Well, kind of. But even if you don't know how to read MRIs, the normal anatomy with 3D shows where each brain structure is from 3 different views, and it's interesting to explore.

The other thing I discovered looking at these more detailed scans is that the tumor is actually pressing against my cerebellum a fair amount, which might be behind a few balance and coordination issues.

Another symptom that's been strange is that my vision in the upper right quadrant has gotten a little funky. I thought I was having trouble moving my eyes up and to the right, and had to put in a conscious effort to do so when driving (gotta look in the rearview mirror, ya know!) but when I was reading I realized that things in that part of my field of vision were translating kind of strangely. What really made me realize this was happening was when I tried to read things in the upper right. I see letters, can tell what they are, can distinguish them as words, but can't actually just read. I have to kind of tilt my head up and to the right to put the whole page in the lower left in order to read.

I've had a couple of other mild visual issues in that area, some fleeting patches of light or shadow looking like blobs or coffee mug stains. The shadows manifested in both eyes, but the light only in the right.

So I'm going to pester the doctor about all of these and find out which images show what, and I'll get back to you all!

Drewbacca
09-10-12, 11:09 PM
DO THESE THINGS AT HOME!!! Such a simple way to keep up to date on whether everything's working the way it's supposed to. . .

I just happened to have more detailed directions (http://health.yahoo.net/articles/healthcare/photos/5-weird-medical-tests-you-can-try-right-now#1) in my inbox this morning...

Lunacie
09-11-12, 08:28 AM
I just happened to have more detailed directions (http://health.yahoo.net/articles/healthcare/photos/5-weird-medical-tests-you-can-try-right-now#1) in my inbox this morning...

Interesting. I passed every test except Romberg's Test - for proprioception

- but it doesn't have anything to do with the causes they've listed.

I've always had trouble with this, part of my strange neurological wiring.

Amtram
09-11-12, 03:42 PM
Well, there's one piece of good news - it looks like this thing is entirely in my bone, no intrusion into the brain, and might be Paget's instead of meningioma. Because it's causing symptoms, surgery will probably still be involved, but it will be focused on reshaping the bone and removing the excess. Neuro agreed that since I'm having these effects, we'll go forward, but we need more tests to firm up the diagnosis prior to scheduling any kind of procedure.

Lunacie
09-11-12, 04:17 PM
Well, there's one piece of good news - it looks like this thing is entirely in my bone, no intrusion into the brain, and might be Paget's instead of meningioma. Because it's causing symptoms, surgery will probably still be involved, but it will be focused on reshaping the bone and removing the excess. Neuro agreed that since I'm having these effects, we'll go forward, but we need more tests to firm up the diagnosis prior to scheduling any kind of procedure.

Pagets, eh? My dad had Paget's in his shoulder/arm.

I thought it only occurred in the long bones. Didn't know it could occur in the head bone.

Tests and waiting suck, but I guess it's best if they know what they're dealing with before starting any treatment.

Drewbacca
09-11-12, 10:56 PM
I've always had trouble with this, part of my strange neurological wiring.

Same here.

purpleToes
09-14-12, 01:48 PM
I am curious what the effects are on the brain of removing that pressure abruptly when it has been adapting to it gradually up to that point. Is it instant relief of symptoms or does the brain take some time to remodel itself back again?

TygerSan
09-14-12, 02:15 PM
Fingers crossed for a good recovery. . .

Funnily enough, I just finished teaching a unit on the brain . . . I'm not a clinician but it looks like the placement of your tumor would be consistent with having visual issues, as the visual cortex is right at the back of the brain, in the occipital lobe.

Also, I'm always afraid that someone's going to make me take a sobriety test and that I will fail but yet be perfectly sober. I'm not so great with the motor tests, but if they actually make you recite the alphabet backwards, I'm totally screwed.

Amtram
09-14-12, 08:40 PM
I am curious what the effects are on the brain of removing that pressure abruptly when it has been adapting to it gradually up to that point. Is it instant relief of symptoms or does the brain take some time to remodel itself back again?

I would imagine that some things would improve pretty quickly, like the constant headache and the tinnitus in my left ear. The rest, however, is kind of a crap shoot that depends upon whether physical damage has been done to any particular structures.

There is nothing in the MRIs that looks like damaged tissue, but looking at the vascular scans, there's been some interruption of blood flow in spots.

It's going to be a wait-and-see thing. I went in for blood tests yesterday to see if the growth is Paget's, and I should know the results by the end of next week. Then we have to figure out how to approach the surgery. After that, I'll give a blow by blow of what changes I notice immediately, and which ones need some kind of therapy to regain. Hopefully there won't be any that persist, but I'm not going to give that any thought until it's an appropriate time to consider it.

Amtram
09-23-12, 12:23 PM
Ugh. Haven't updated here. Not Paget's, but my wonderful neurosurgeon consulted with several other doctors at the hospital, and it looks like we're back to the original scenario where we take out the giant hunk, see what it is and see what's behind it and take it from there. Surgery is 10/11/12. I think I can remember that.

I've been keeping a list of symptom manifestations, partly for my doctor, and partly for myself because some of them have been getting noticeably worse over a very short period of time. I know this will be tl;dr for many of you, but I'm going to follow with some information about the functions of the affected areas so you can cross reference. Here's my list so far:

-Headaches (these have become progressively worse, more frequent, and more persistent – originally attributed to allergies)



-Tinnitus in left ear has become distinct and progressively louder



-Short-term memory impairment (had thought this was caused by Cymbalta, as it was a problem after several years at 120mg/day, or perhaps a worsening of my ADHD.) Worse than usual, resulting in repeating things I’ve said to the same people several times in a row, and forgetting things that were said to me shortly after they were said. Others have brought this to my attention, although I’m occasionally aware of it myself. I am also finding myself lost briefly even when performing routine tasks like preparing a recipe I have had memorized for years. I am also having trouble not only remembering what day or date it is, but reading a calendar. I can know the day and date and still look at the wrong week and think that I have events coming up that day that are actually a week or more in the future.



-Some expressive aphasia – also originally thought this was Cymbalta, because I experienced similar episodes of blanking out during the same period as above. This is markedly different from usual ADHD. Normal “word loss” experience is that my thoughts will flood with many words that have characteristics in common with the word I want, making it more difficult to sort through and find it. At this time, when I can’t think of a word, I can’t think of any words at all. I have periods of near silence in my brain, which is very disturbing, because even medicated, I have always had constant “brain chatter.” I am forgetting what I’m trying to say when I speak much more frequently than usual.



-Loss of balance – I don’t feel any specific muscle weakness, although it is more difficult to move my eyes up and to the right, but I am bumping into things as I walk, and have begun to tip over while standing still on occasion. I am beginning to feel occasional bouts of dizziness similar to the onset of syncope even while sitting, but have not lost consciousness.



-Both my typing and my handwriting have deteriorated over the last several months. Normally my typing is fast and accurate, but I am hitting the wrong keys almost as often as the right ones, and backspacing over typos in more than half of the words. My speed has gone down in part because of this and in part because I find myself blanking on what I was going to type. My handwriting has never been neat, and I’ve always had trouble inverting tails on letters, but recently I was taking copious notes and found that I was scribbling things that weren’t even letters, and lines of script wobble up and down.



-There are problems with word perception in the upper right quadrant of my field of vision. I can recognize letters and words as letters and words, but in order to read and comprehend, I find myself tilting my head to read with my left eye on the page.



-Several months ago my optometrist noted excessive eye pressure in both eyes, particularly the left, and sent me for a thorough evaluation for glaucoma. None was found, but my prescription for corrective lenses has changed more rapidly than normal over the past two years or so.



-I am having difficulty with my sense of direction and spatial relations. In the past I have been able to negotiate unfamiliar places with minimal reliance on maps.



Because I haven’t traveled far from familiar routes in some time, I was unaware how bad this was until a recent trip to colleges in New England. I googled directions, printed out large and step-by-step maps, plotted out routes on full size paper maps, and still needed to have the GPS turned on and preprogrammed with the selected route, because I had gotten lost when map directions and GPS directions conflicted.



When we arrived on campuses, I was unable to get a fix on where we were and where we needed to go even though the areas on maps were small.



I have sewn and designed clothing for years, and suddenly found myself lost trying to draft a simple paper pattern, not sure what pieces need to be changed or how to change them even though I’ve done this and even taught it without any difficulty before.

Amtram
09-23-12, 12:48 PM
From a site chock-full of good information and educational links, Brain Info (http://braininfo.rprc.washington.edu/Default.aspx), I want to share the following:

AREAS OF THE HUMAN CORTEX INVOLVED IN LANGUAGE (http://braininfo.rprc.washington.edu/indexotheratlas.aspx?othersiteID=1045244870)

http://www.pc.rhul.ac.uk/staff/j.zanker/teach/ps2080/l5/PS2080_5_files/Image237.gif

This is an image of the left hemisphere. The structures that are involved here have unique functions that are not duplicated on the right hemisphere. My lump is smack dab over area 17 and extends a bit down into 18, and has deformed most of the central area of the left hemisphere all the way to the outer edges of the temporal lobe. So let's see what it says about what can result from damages to these areas that apply to me (in bold):

The left primary visual area (http://www.wanprc.org/luria/semantic2.html) receives fibers in somatotopic distribution from the left half of each retina. Thus, it receives the input necessary for a point-to-point representation of the right half of the visual field. Penfield and others had shown that stimulation in that area produced a flash, or "phosphene". Resection of the area was known to produce a left homonymous hemianopsia, i.e., patient does not respond to visual stimuli in the right half of the visual field. The limits of such a visual field defect are determined by the "confrontation" method or by perimetry.

The secondary visual area (http://www.wanprc.org/luria/semantic2.html) is involved in the perception of visual patterns, viz, in the recognition of so-called "simultaneous patterns", as opposed to the "sequential patterns" with which the premotor area (http://braininfo.rprc.washington.edu/centraldirectory.aspx?ID=2331) is concerned. Stimulation of this area may produce formed images; ablation leads to abnormal control of eye movements and instability of vision, so that when patients read they may jump lines or begin reading in the middle of the page. Spatial perception is impaired, and the field of visual attention may be constricted, i.e., the patient may be able to see only one or two objects at a time, regardless of their size, background, or position in the visual field (simultagnosia). The following tests were used to demonstrate damage of the secondary visual area.

The temporo-parieto-occipital area (http://www.wanprc.org/luria/semantic2.html) is phylogenetically one of the newest areas of the human cortex and constitutes the "zone of overlap" between. the cortical portions of the auditory, somesthetic-kinesthetic, and visual analyzers. Penfield had reported that electrical stimulation of this area occasionally produced deja vu, a visuo-auditory hallucination or the "reliving" of an old experience. Destruction of the area produced a number of signs that Luria judged could be traced to a loss of "simultaneous schemata", i.e., to loss of the memory for, or ability to recognize, patterns in a group of auditory, visual, and/or somesthetic stimuli occurring simultaneously. This concept was similar to that of other investigators. According to Goldstein the antero-occipital area played an important role in the "transformation of sequential recognition processes into instantaneous recognition." According to Head the area was necessary for the organization of individual "traces" into over-all, "simultaneous systems." Luria found that the most prominent signs of damage to this area were spatial disorientation, loss of the "predicative" aspect of speech, agraphia, and alexia.

1. Spatial disorientation was demonstrable by a number of tests. <dl><dd>a. Shown the north and south poles of a compass, the patient was unable to tell which pole represented East and which West. </dd><dd>
</dd><dd>b. In drawing a map he positioned landmarks according to associations that occurred to him impulsively rather than according to conventional geographic coordinates.</dd><dd>
</dd><dd>g. In attempting to write he might construct individual letters upside down or backwards. </dd></dl>2. The speech disturbances of semantic aphasia were said to arise from the facts that (1) the patient was unable to deal with grammatical constructions and sentences as a whole and (2) he lost the meanings of words that derive from their relationship to general frames of reference, i.e., he retained the denotative or "nominative" meanings of words but lost the connotative or "predicative" meanings.
Loss of the ability to handle grammatical constructions and to deal with sentences as a whole was shown by the following tests:
<dl><dd> c. He might be able to name the days of the week in correct order, but be unable to recite them backwards or answer such questions as, "What day comes before Wednesday?" Luria regarded this as evidence that he could not conceptualize or operate on the series as a unit to derive information in the form required by the task. </dd></dl>3. Loss of the predicative aspect of words led to:
<dl><dd>a. inability to comprehend metaphor </dd><dd>
</dd><dd>b. nominal aphasia. The form of nominal aphasia seen with temporo-parieto-occipital lesions differed from that produced by damage to the postero-inferior temporal lobe in that prompting helped. Often the examiner needed only provide the first letter of the word sought, and the patient recalled it. Luria concluded that in this case the patient had not lost the auditory schema of the word but the system of associations that, for the normal person, mediate the process of recall. </dd></dl> <dl><dt>
</dt></dl> <dl><dt>
</dt></dl>

Amtram
09-23-12, 01:00 PM
Some of the pressure is on the temporal lobe, resulting in some Auditory Aphasias (http://braininfo.rprc.washington.edu/indexotheratlas.aspx?othersiteID=1045244870). My problems seem to be more expressive than receptive:

1. The predominant sign of an expressive speech disorder in auditory apahasias is nominal aphasia. Spontaneous speech is frequently interrupted by word-searching. Intonation and grammatical structure may be normal, but the speech consists largely of opening phrases, e.g., "Well, you see ...it's like this..." and interjections, e.g., "Oh hell, I don't know why I can't get that". Unlike the nominal aphasias that result from parietal or frontal lobe lesions, the nominal aphasia associated with temporal lobe lesions is is not alleviated by prompting. (this goes back and forth for me - the confusion of words that start with the same letters has never been helped before with prompting, but in certain cases lately a little prompting helps. Not always.)

2. Literal and verbal paraphasias occur. The articulation (motor aspect) of phonemes and words is intact, but the patient may substitute oppositional phonemes for one another, e.g., "p" for "b", or substitute words from the same sphere of meaning." e.g., "elbow" for "arm". Literal paraphasias are considered compensatory in nature. The attempt to utter the word "car" may result in such inhibition of the "auditory schema" of "car" that it is easier for the patient to say "automobile" instead.


Some reading and writing difficulties apply as well:
The degree of reading and writing difficulty in auditory aphasias depends on the extent to which these functions involve auditory analysis.

1. Patients may understand the meaning of a passage even though they cannot read it aloud. They only have difficulty reading words that are unfamiliar and that must be sounded out to be understood.

2. A patient is usually able to write his name and other familiar words on the basis of "kinestheic schemata" but has difficulty with words that he would ordinarily repeat to himself as he writes. He can copy written material without difficulty but makes phonemic substitutions in writing to dictation, and is virtually unable to write spontaneously. (I can still write spontaneously, but it takes a heck of a lot more time and effort.)

Amtram
09-23-12, 01:10 PM
Because the various structures of the left hemisphere are essential for communication between other structures, some Afferent Motor Aphasias (http://braininfo.rprc.washington.edu/indexotheratlas.aspx?othersiteID=1045244870) seem to be present as well. I'm stumbling over words when I speak (in addition to stumbling in general) and biting my tongue and the inside of my mouth so often that there's always something hurting in there.

Efferent Motor Aphasia (http://braininfo.rprc.washington.edu/indexotheratlas.aspx?othersiteID=1045244870) doesn't seem to be much of a problem except for some mild versions of what are symptoms of damage to Broca's Area:

The predominant signs of damage to "Broca's area" are also loss of the "automaticity of speech" with the emergence of perseveration. There may be a loss of "dynamic schemata" at the phonemic, word, or sentence level. If disruption occurs at the phonemic level the patient may be totally aphasic. If it is less severe, some speech is retained, but the patient loses his "feel for the language," i.e., his speech lacks normal intonation and is composed of sentence fragments rather than connected phrases. The "predicative aspect" of speech suffers more than the "nominative aspect", i.e., verbs and adjectival, adverbial, and prepositional phrases are affected more than nouns. This gives rise to the so-called "telegraph style" of speech, e.g., "I came... Moscow...hospital ... doctor ... questions..."

Amtram
09-23-12, 01:32 PM
Right in the middle of all this is the Hippocampus. The associated functions are early memory storage, formation of long-term memory, and spatial navigation. The memory functions particular to the Hippocampus seem to be OK, but the spatial navigation's a problem.

There's enough cushion around the Amygdala that it might be minimally involved or not involved at all, but it does play a part in short-term memory. Mostly it's involved with emotions, but this is hardly a time for me to be assessing connections between a physical cause and my emotional state!

The Entorhinal Cortex is above and in front of the Hippocampus, and plays a part in declarative memory (conscious recall - being able to remember "on demand") which has been a problem all my life, so it's hard to tell if it's any worse. It also is associated with spatial memory, but less so than the Hippocampus, and more on the right hemisphere than the left. Lastly, it assists in self-localization, which consists of integrating sensory input to orient your physical location with your surroundings. I think I'm seeing that a lot, more in new environments than familiar ones, but I am walking around in circles at home, too.

Amtram
09-23-12, 01:33 PM
Hope that wasn't too much all at once. . .

Lunacie
09-23-12, 05:29 PM
That's a LOT! I mean for you to deal with more than for us to read.

I didn't realize how many issues you're having that are new or worse now.

Sorry you have to wait a few more weeks for the surgery.

Waiting can be the hardest part. I'm sending good thoughts for you! :)

Amtram
09-23-12, 05:35 PM
It's definitely a lot harder to see how it's affecting me if you're reading stuff I've written. You see the difference in person. Even when I'm typing. It's nuts. What you don't see from where you are is how darn long I sit here staring with my fingers resting on the keyboard trying to compose a sentence and correcting all the typos.

Flory
09-23-12, 06:32 PM
sending you best wishes ! seems you are making a lot of progressin understanding this condition, i really hope things op wise/treatmeant wise can progress quite quickly and you can get some peace of mind :)

Amtram
09-24-12, 08:53 AM
And just to make a point - I went back and re-read what I wrote last night because I had a brilliant idea of compiling some of the most helpful brain links I've found because of this and realized that my bullet point post is almost a word-for-word repeat of what I said at the beginning. You'd think that I would remember that, but I don't.

Drewbacca
09-24-12, 04:38 PM
I once had a conversation with an Alzheimer's victim who spoke fluent Italian. When my GF introduced me, her great aunt thought my name was Italian and began to speak to me in her native tongue. A few minutes later, she introduced herself and asked my name... the scenario repeated itself about twenty times throughout the night. IF I played my cards right, I could have had her teach me conversational Italian over the course of an hour and then amazed her with my knowledge an hour later...

Then again, I do the same thing and I can't even blame old age... *sigh*

Amtram
09-24-12, 08:52 PM
The secondary visual area (http://www.wanprc.org/luria/semantic2.html) is involved in the perception of visual patterns, viz, in the recognition of so-called "simultaneous patterns", as opposed to the "sequential patterns" with which the premotor area (http://braininfo.rprc.washington.edu/centraldirectory.aspx?ID=2331) is concerned. Stimulation of this area may produce formed images; ablation leads to abnormal control of eye movements and instability of vision, so that when patients read they may jump lines or begin reading in the middle of the page. Spatial perception is impaired, and the field of visual attention may be constricted, i.e., the patient may be able to see only one or two objects at a time, regardless of their size, background, or position in the visual field (simultagnosia). The following tests were used to demonstrate damage of the secondary visual area.

When I posted this the other day, I hadn't highlighted when patients read they may jump lines or begin reading in the middle of the page or the field of visual attention may be constricted, i.e., the patient may be able to see only one or two objects at a time, regardless of their size, background, or position in the visual field (simultagnosia) because I hadn't experienced them. Now I have. The second one, while I was driving.

I had no choice because it was an appointment I wouldn't be able to reschedule for months, and it was only a short drive, so I thought it would be OK. Once I realized that I was perceiving only pieces of what I was seeing on the road, I started blinking rapidly - thought I might trick my brain into thinking it was seeing a series of pictures and put it together like a kinetoscope. It worked OK, but it's not such a good technique to use behind the wheel. (I'd also be in trouble if there were any Weeping Angels around, but I think I'm safe on that one!) When things were moving slowly or there were fewer moving objects visible, it was easier, but still really hard.

I can't even accurately describe it except like real life was a set of pictures in a flip-book and would stick on one page before flipping to the next. Blinking allowed me to see the next picture in the series faster. Not a strobe light effect, because things that were moving would seem as if they'd stopped for a moment.

And just imagine - if this lump had been on the right occipital lobe, I would be experiencing something entirely different.

Amtram
09-25-12, 03:01 PM
So today, when I have plenty of time to think about this and feel sorry for myself, I'm also fighting anger because I'm remembering so many conversations and debates with people who think that there's some kind of magic to neuroplasticity. Right here in my head is clear evidence that there are physical structures in the brain that have highly specialized functions that are not, and cannot be, duplicated elsewhere in the brain.

Problems in the the brain itself, an organ formed by genetic instructions and physical and psychological environmental influences just like every other part of our bodies, cannot be "corrected" by diet or exercise or acts of will. Functions that are simple or are duplicated in other areas of the brain can be partially rehabilitated - sometimes. Occupational and physical therapies can train an individual with a damaged or incorrectly formed brain to compensate, but only within limits based on the ability of the physical brain to relocate the function.

What function I regain post-surgery depends entirely upon how much permanent damage has been done, and to what areas. Once the lump is removed and my brain is no longer compressed, it may well be that certain areas were deprived of blood and nutrients and shut off from communication will not improve. A certain amount of neuroplasticity will allow new cell generation in partially damaged areas, but if some of the tissue is destroyed, it ain't coming back. And if that tissue was wholly or mostly responsible for regulating the activities in which I'm currently impaired, that impairment won't go away.

I may be able to re-learn certain things, but it won't be as easy as it was before, and it will feel different when I'm trying to do it. I'll keep on trying to be objective as I update things here, but I can't guarantee I won't get snippy if someone suggests I can fix something that's impossible to fix.

silivrentoliel
09-25-12, 03:11 PM
(I'd also be in trouble if there were any Weeping Angels around, but I think I'm safe on that one!)

:lol: they'd just be moving at a bizarre speed... can you imagine rapidly blinking in front of a weeping angel? minus the terror? :lol:

So today, when I have plenty of time to think about this and feel sorry for myself, I'm also fighting anger because I'm remembering so many conversations and debates with people who think that there's some kind of magic to neuroplasticity. Right here in my head is clear evidence that there are physical structures in the brain that have highly specialized functions that are not, and cannot be, duplicated elsewhere in the brain.

Problems in the the brain itself, an organ formed by genetic instructions and physical and psychological environmental influences just like every other part of our bodies, cannot be "corrected" by diet or exercise or acts of will. Functions that are simple or are duplicated in other areas of the brain can be partially rehabilitated - sometimes. Occupational and physical therapies can train an individual with a damaged or incorrectly formed brain to compensate, but only within limits based on the ability of the physical brain to relocate the function.

What function I regain post-surgery depends entirely upon how much permanent damage has been done, and to what areas. Once the lump is removed and my brain is no longer compressed, it may well be that certain areas were deprived of blood and nutrients and shut off from communication will not improve. A certain amount of neuroplasticity will allow new cell generation in partially damaged areas, but if some of the tissue is destroyed, it ain't coming back. And if that tissue was wholly or mostly responsible for regulating the activities in which I'm currently impaired, that impairment won't go away.

I may be able to re-learn certain things, but it won't be as easy as it was before, and it will feel different when I'm trying to do it. I'll keep on trying to be objective as I update things here, but I can't guarantee I won't get snippy if someone suggests I can fix something that's impossible to fix.

will it effect things that are currently effected, or will it impact other areas as well?

at any rate :grouphug: waiting is maybe not *the* hardest part, but it's right up there.

Lunacie
09-25-12, 03:37 PM
So today, when I have plenty of time to think about this and feel sorry for myself, I'm also fighting anger because I'm remembering so many conversations and debates with people who think that there's some kind of magic to neuroplasticity. Right here in my head is clear evidence that there are physical structures in the brain that have highly specialized functions that are not, and cannot be, duplicated elsewhere in the brain.

Problems in the the brain itself, an organ formed by genetic instructions and physical and psychological environmental influences just like every other part of our bodies, cannot be "corrected" by diet or exercise or acts of will. Functions that are simple or are duplicated in other areas of the brain can be partially rehabilitated - sometimes. Occupational and physical therapies can train an individual with a damaged or incorrectly formed brain to compensate, but only within limits based on the ability of the physical brain to relocate the function.

What function I regain post-surgery depends entirely upon how much permanent damage has been done, and to what areas. Once the lump is removed and my brain is no longer compressed, it may well be that certain areas were deprived of blood and nutrients and shut off from communication will not improve. A certain amount of neuroplasticity will allow new cell generation in partially damaged areas, but if some of the tissue is destroyed, it ain't coming back. And if that tissue was wholly or mostly responsible for regulating the activities in which I'm currently impaired, that impairment won't go away.

I may be able to re-learn certain things, but it won't be as easy as it was before, and it will feel different when I'm trying to do it. I'll keep on trying to be objective as I update things here, but I can't guarantee I won't get snippy if someone suggests I can fix something that's impossible to fix.

True dat. ^

Will keep good thoughts that no brain tissue was damaged too badly to heal again.

Our bodies are amazing at healing themselves, with a bit of help from doctors of course.

Amtram
09-27-12, 09:27 AM
Well, this is fun. The black text here is turning blue off and on. Not the whole of it, but certain areas of it. The closer it is to the other blue text ("Smilies" to the right and "Post Icons" at the bottom left) the more likely it is to turn that shade of blue. At least I can read that - yellow text would be awful.

Lunacie
09-27-12, 10:07 AM
Well, this is fun. The black text here is turning blue off and on. Not the whole of it, but certain areas of it. The closer it is to the other blue text ("Smilies" to the right and "Post Icons" at the bottom left) the more likely it is to turn that shade of blue. At least I can read that - yellow text would be awful.

I'd be good with blue letters - not so good with it changing back and forth.

I'm grateful the text here isn't yellow (for me) too. :)

Oops ... yellow smiley there. :giggle:

Drewbacca
09-27-12, 12:44 PM
Our bodies are amazing at healing themselves, with a bit of help from doctors of course.

I'm fairly certain that the part of my body responsible for healing my body is the part that is broken...

Amtram
09-27-12, 03:54 PM
It's only that one shade of blue, too. I've checked, and I don't get the same kind of flashes with any other color. So far. . .

Amtram
09-27-12, 10:00 PM
For those of you who are studying neuroscience or merely adventuresome, I have a very large zipfile on Mediafire of my scans, PM me if you have lots of room on your computer to download it, and I'll share the link.

Amtram
10-01-12, 09:55 AM
Pre-admission testing and pre-surgical consult with the neurologist tomorrow. We're hitting the home stretch.

BTW, I had to wean myself off of Viibryd. My psychiatrist was pleased that I had figured this out and started splitting my pills and titrating down as soon as I knew I was going to need surgery - not only is it a good thing to eliminate long-acting psychiatric meds from your system prior to brain surgery, but this particular medication has some anticoagulant effects that haven't been fully studied. When you're going to have surgery in an intensively vascular area, you don't want your blood thinned!

Unfortunately, he also wanted me to stop the Adderall completely - not even a teensy bit. Blech.

The most irritating thing about it is that even though I weaned off the Viibryd correctly, and the brain zaps are infrequent and mild, I'm already unbalanced. If I'm wobbling along and I get hit by a zap, I have to grab onto something so I don't fall over all the way.

This has made me highly inclined to recline. Heh. I'm not a big fan of television, but reading is really tough. (I've set the font size on my browser to 18 and shrunk the window so I can read here. Pitiful!) So I lined up some Bollywood movies, and have come to the conclusion that I need to learn Hindi because the subtitles are really tiny. . .

Amtram
10-01-12, 10:12 AM
:lol: they'd just be moving at a bizarre speed... can you imagine rapidly blinking in front of a weeping angel? minus the terror? :lol:

How could it be minus the terror - did you see the latest episode?!?!?!



will it effect things that are currently effected, or will it impact other areas as well?

at any rate :grouphug: waiting is maybe not *the* hardest part, but it's right up there.

All that I know right now is that whatever symptoms that I have right now are related to the pressure. I'm thinking that it's more likely that the ones that developed more recently will ease up or disappear, because the areas that control them were compressed for a shorter time, but that's not a certainty.

The functions that are controlled or influenced by more than one area should be a little more easily recovered or compensated for once the pressure's off, and since the cerebellum is a bit more resilient, signals to my body might improve more quickly than my perceptive and cognitive problems.

The thing is that there's no guarantee that my left hemisphere will spring back to its original form once the space is cleared, and there's no way of telling how long it will take to do whatever expansion it ends up doing. And until it's finished, it'll be hard to tell even with scans what areas, if any, are gone for good. Some will show up on an MRI looking like a darker color (meaning they're dried up - the more water there is in the part being scanned, the brighter it is) and there may be some empty spaces between the gyri where that brain tissue spread out but didn't expand to fill the space.

To be honest, all I care about now is having the lump taken out and waking up afterwards. If I wake up from surgery, that's success, and I'll deal with whatever happens after that a day at a time.

(BTW, it's highly unlikely that I'll die on the table, but from a practical standpoint, it's always good as a point of comparison, because even a mediocre outcome is preferable to that one, right?)

Conman
10-01-12, 10:16 AM
as long as you dont have doctors from Scrubs (to a certain extent), Children's Hospital, South Park, or That 70s Show you should be fine

Amtram
10-03-12, 09:56 AM
Went in for pre-admission testing and then saw the doctor for the final consult and signing of paperwork.

He told me that in his experience, it's not unusual for certain symptoms to progress rapidly after whatever incident took place that resulted in a diagnosis. This was very good to hear, because my spatial perception is really wacked out, the visual difficulties are much more intense, and I pretty much need to close my eyes when I'm riding in the car because of them.

I'm losing my balance when I walk (usually tipping over to the right) and there's been a noticeable loss of fine motor skills in my right hand. I like to dry my laundry on the line, and I'm having a big problem with clothespins. I'm having difficulty picking things up and holding them without dropping them.

The language problems have now extended to speech difficulties. I can still talk without sounding particularly damaged, but I'm having occasional difficulty with not being able to say words or being able to say the word only after several attempts with the first letter or syllable.

8 more days.

Lunacie
10-03-12, 11:17 AM
Waiting is so very hard.
I'm sending good thoughts for the waiting time as well as the outcome.

Amtram
10-03-12, 02:30 PM
He's pretty certain that he should be able to get everything out in a single procedure, and is almost as certain that there won't be anything else that has to be done after that (unless they can't reconstruct my skull right away!)

And let me tell you - sometimes complaining about things gets you places. I vented on my facebook about the insurance company wanting me to spend only two days in the hospital, and just now got off the phone with a rep who saw my status and offered to escalate it so the doctor has an easier time determining how long I actually need to stay!

TygerSan
10-03-12, 03:47 PM
And let me tell you - sometimes complaining about things gets you places. I vented on my facebook about the insurance company wanting me to spend only two days in the hospital, and just now got off the phone with a rep who saw my status and offered to escalate it so the doctor has an easier time determining how long I actually need to stay!

2 Days? After brain surgery? Seriously. . . that's crazy. Glad to see they're reconsidering.

A few years back I had a friend who complained about a cable company on Facebook. . . come to find out they have people for whom part of their job is to troll the internet looking for complaints and responding to them apologetically. . . it was really creepy to see.

Amtram
10-03-12, 06:35 PM
Kind of creepy, yes, but at the same time, I've now gotten a patient advocate who is making sure that I get whatever my doctor says I need.

salleh
10-03-12, 07:29 PM
Amtram ....darling girl ....what can I possibly say ???? other than I will be holding the best possible thoughts for you .....

and remember, most doctors are crepehangers.......I know my dad was .....they will paint the worst case scenario, and anything above that is gravy ...not to mention, making them look good ! ......


With all papers signed and everything .....when is the actual surgery???

I will be there, invisibly, waiting in the waiting room and pacing .......and yah for patient advocates ......I don't know who first had that idea, but it's one of the best ever, when it comes to stuff like this ......


and yes, there may be some permanent damage, but then again ....there may not ! .....it's that old saying ......prepare for the worst, hope for the best .....


I think you're one brave lady .......

Amtram
10-03-12, 07:55 PM
Surgery is Thursday - wasn't it nice of them to give me a date I could remember? 10/11/12. Even though I can't consistently recall what day or date it is lately, that one is memorized!

ADHDTigger
10-05-12, 12:53 AM
Trammie, I want you to know that I am doing that whole "prayer" thing that I think so much of while I hold my breath and truly BELIEVE in fairies and all good things.

So that we all understand, you are not allowed to be anything less than FABULOUS with all this. Since grey is the awareness color for this cancer, I think that you need silver all around you- lame' scarves, gowns, and slippers will do for a start.

Honey, you are taking all of this squarely on the chin. Given your incredible attitude, take charge and make EVERYTHING yours.

<3 (((hugs)))

Amtram
10-05-12, 10:57 AM
Coming from someone who's a pro at tackling an onslaught of crummy life issues, that's high praise. Thanks, Tig. BTW, DD#1 is coming home today, and we're heading out to the beauty supply store so we can dye my hair silver/white, so we're working on the color theme!

6 more days. If I weren't counting down to a resolution, I'd be having a lot harder time with this. But what I wouldn't give right now to be able to take about 600mg of Advil! The pain is not in the area of the lump, but in the front of my head and down the neck and arm running down from it. I'll be happy to be rid of that, for sure.

The doctor agreed to take pictures of Roscoe when he's taken out, I just have to remind him and the nurses to do that. There's a funny idea - me giving other people reminders!

Lunacie
10-05-12, 12:45 PM
Lunacie puts some shiny sequins on everything!

Drewbacca
10-05-12, 04:09 PM
Lunacie puts some shiny sequins on everything!

Does that make you an ABBA fan?

Lunacie
10-05-12, 04:49 PM
Does that make you an ABBA fan?

I'll get back to you on that. :giggle:

Amtram
10-05-12, 04:53 PM
Yes. If it stands for "Amtram's Big Bony Anomaly."

So there.

Amtram
10-07-12, 10:09 AM
Difficulty with speech has increased noticeably in the last couple of days. It doesn't persist, kind of happens in clumps, and isn't related to the complexity of the words, either. I'm finding that I have to do that word substitution thing mentioned in the description of expressive aphasias, which I hadn't had as much trouble with before.

I'm also finding that in order to read, I kind of have to line my nose up with the right hand edge of the monitor so that I'm looking at text almost exclusively with my left eye. Perceptually, I don't consciously notice a deficit in my peripheral vision or object recognition on the right, I just don't seem to process it.

I've tried turning my head when reading to see what happens if I focus on the text using my right eye, and it's pretty bizarre what happens - I immediately get a sensation like an SSRI withdrawal brain zap (and that might be involved, since it's been only a couple of weeks since I stopped Viibryd) but it's almost like a pop between understanding what I'm seeing and not understanding it. It's there, and I know what it is, but it's jumbled up.

It reminds me of one of the patients in an Oliver Sacks book (don't recall which one) who had perceptual blindness because of occipital lobe damage. His eyes worked perfectly well, and he could navigate himself in space with little assistance, but he was functionally blind - couldn't interpret the information his eyes were trying to send. It's a strange thing to think about, and even more odd to be getting a taste of. . .

Drewbacca
10-07-12, 04:07 PM
I find it interesting that you mention both the expressive aphasia and vision issues in the same post. I have always struggled/used word substitution. I also suffer from strabismus which frequently causes my mind to simply block out the information coming from my non-dominant right eye; sometimes, when it is active I get double-vision.

ADHDTigger
10-09-12, 03:55 AM
Trammie, I hope you get to read this...

You need silver things and toys that you can touch and play with. You need Silly Putty and Play Doh.

You need things that are tactile to play with as you recover. Truly, this is helpful.

Mostly, you need to recover.

We need you to keep us thinking. We need you because we love you. I need you.


Can someone let us know how you are as this all progresses?

(((HUGS))) and everything I can think of...

Amtram
10-09-12, 06:22 AM
Hubby has created an account here, and promised to log in once I'm out of surgery (Two days!!! Woohoo!!). I don't think I'll be able to get onto the internet while I'm in the hospital, but there are a couple of people I can get in touch with surreptitiously on the phone from there, I think.

danelady
10-09-12, 12:14 PM
Big hugs and well wishes and healing thoughts to you!

Conman
10-09-12, 12:36 PM
have fun! haha

Amtram
10-09-12, 12:50 PM
I was playing around with testing the limitations of my vision, because I want to be better able to gauge the changes after surgery, and I noticed a few things.

I actually can read with my right eye, it's just harder, and the peripheral vision in that eye is significantly less than in the left. Closing my left eye, it's like I'm suddenly seeing things through a semi-opaque tube. So some of the reading difficulty is coming from the smaller field of vision that makes it harder to see more than a few words at a time clearly.

Another strange thing is that in my right eye only, I'm seeing "ghosts" of text! If you wear corrective lenses and have astigmatism in one or both eyes, you're familiar with this effect. However, it usually comes from the conflicting input from the two eyes. This is happening without any input from the left.

On the simple explanation side (pressure on the left side of the cerebellum) my right foot is starting to drop. Not so much that I trip or can't lift it, but it flops down when I'm walking. I should actually notice an improvement on this and the other motor issues on my right side before anything else.

Two more days to go!

Amtram
10-10-12, 10:12 PM
Tomorrow's the day. I'm hoping that when I get back here, I'll be able to tell about some changes I've noticed already from my brain having its skull back to itself again!

Unmanagable
10-10-12, 10:41 PM
Sending you tons of love and thoughts for continued strength and some speedy healing. :)

((((((Hugs))))))

Soliloquy
10-11-12, 03:02 AM
There's nothing like coming in at the last minute! I have just joined the forum and immediately noticed your post. I can't express how amazed and touched I am by your willingness to share this journey with us. My thoughts and well wishes will be with you today and I'm sending an extra-special virtual bear hug! So looking forward to following your recovery story!

Humbled by your strength and also thinking of your family today. Silver hugs!!!

Emtram
10-11-12, 02:06 PM
Amtram is out of surgery. Her doctor said things went better than he had expected. Roscoe was all bone.

BR549
10-11-12, 03:39 PM
Amtram is out of surgery. Her doctor said things went better than he had expected. Roscoe was all bone.

GREAT NEWS!!!!!! Thanks for giving us the update! I'm assuming she's still in recovery or has she been moved? Please continue to keep us posted and give her BIG HUGS from all of us!! :)

mctavish23
10-11-12, 04:23 PM
Ditto on HUGS and Please Keep Us Posted.

tc

mctavish23

(Robert)

Lunacie
10-11-12, 04:26 PM
Hugs and healing energies from me!!!

Good news is always welcome!

ADHDTigger
10-12-12, 12:43 AM
Em, snuggle the Am for me.

I just want my friend to be okay. Your h*ll is a whole different thing. Believe me, I know that h*ll.

Thank you for posting and letting us know how your precious- and ours- is doing.

(((hugs)))

salleh
10-12-12, 03:34 AM
I love it when doctors say that things went better than expected .....this is fabulous news .....gentle hugs for you Amtram .....now I can't see, there's all this water in my eyes.....

Unmanagable
10-13-12, 04:02 AM
Amtram is out of surgery. Her doctor said things went better than he had expected. Roscoe was all bone.

:yes:

ginniebean
10-14-12, 02:04 PM
Oh Amtram! I can't express my hopes and reliefs for you, I know you feel us pulling for you and how much we care. Sending you much love.

Dizfriz
10-14-12, 04:10 PM
Amtram is out of surgery. Her doctor said things went better than he had expected. Roscoe was all bone.
Whew! Slowly releasing breath......

Dizfriz

danelady
10-14-12, 04:35 PM
Sooo very happy things went well!

Woo hoo!!!

Luvmybully
10-14-12, 04:36 PM
Been thinking of you Amtram! Hope you have a speedy recovery!

Unmanagable
10-15-12, 01:28 PM
Hoping each day is bringing with it a lot more healing and a lot more "feel better".

Thinking about ya'll.

((((Hugs))))

danelady
10-15-12, 01:53 PM
Thinkin' of ya and hopin' things are comin' along as they should!

Amtram
10-16-12, 11:35 AM
I'm just popping in here briefly to thank everyone for their support, and give an update. . .

I'm still in some pain, although it's mostly incision pain and swelling, pretty much manageable with extra strength acetominophen. Very, very, very tired.

Some things changed dramatically immediately after surgery. In the recovery room, I opened my eyes, and my peripheral vision was back in all its stunning myopic glory! I also noticed physical sensation in my right hand and foot that had been lost so gradually I hadn't been aware of how different it felt. The next 24 hours in ICU, I didn't notice much except that morphine has absolutely no effect on pain in me - and yet the night nurse's solution when I was in tears from the pain was to give me more of it. I was of sound enough mind to tell her "I'll wait until you contact my doctor and get permission for dilaudid, OK?" Sheesh.

Once I was in a regular room, I tried to get up and around as much as possible. Since most of my time was spent sleeping, that didn't amount to much, but it was wonderful to discover that my sense of equilibrium was back, and I was walking straight, no wobbling, no foot drop on the right, no odd visual perceptions of movement around me.

The next day, things were happening that indicated that my brain was relaxing into the newly vacant space. If you look at a horizontal cross-section of the sinuses, you will see that they look sort of like a Tim Burton-esque tree - a long straight trunk with equal pairs of curved branches coming out from either side. Mine were not quite straight like that, and on the second day, they started to snap back into their rightful places with audible clicks. (Audible to me, at least!) My tinnitus is back down to a more ignorable level, and the overwhelmingly loud single tone that was in my left ear only was gone.

The day after, I was awake enough to attempt reading, and I can do it again! Still need a larger type for the computer, though. My left eye isn't working as well as my right, because it was under so much pressure that has now been removed, but I don't have the ghost images in either that I did before surgery.

Word loss is still a problem, but I can see that it may be quite a bit more time before I can learn to compensate for that or overcome it, but I was able to converse in Spanish with the lovely lady who came in to clean my room every day, so I haven't lost everything!

My doctor said that everything came out pretty neatly, some tissue attached to the tumor, but it hadn't invaded the dura, and was completely encapsulated. We're waiting for the pathology report, but the pathologist's initial diagnosis of Roscoe was "meh." (Literally. This was my doc quoting the pathologist!) The skull was too deformed to resect, so I now have a piece of custom plastic cement, and I could really carry off the bald look as a fashion if it weren't for the giant incision taking away from the glorious shape of my naked head!

Lunacie
10-16-12, 11:44 AM
AMTRAM !!!

Good to see you on here. And wonderful to hear so many of the problems seem to be resolving now! :yes:


Feel like I should make a joke about the plastic skull - but can't think of any.

(((hugs))) Good thoughts and healing energies still heading your way.

meadd823
10-16-12, 06:50 PM
I am happy to hear things went well - as I was confident they would!

Good to see your return here regardless of how briefly.

That both feet walking thing does improve gait much like disappearing ghost imagery does reading ability.

Unmanagable
10-17-12, 01:20 AM
So glad to see ya' on here, Amtram!! :)

(((((Hugs)))))

Ever since your husband posted that Roscoe was all bone, I've been trying to come up with a good bone head joke. :giggle:

Luvmybully
10-17-12, 09:40 AM
YAY! Amtram! What awesome news to hear of so many immediate improvements!

SOOO good to hear from you...

:grouphug:

danelady
10-17-12, 10:54 AM
I get new posts sent to my phone..but I can't post here frosm my phone. So I was able to read your message yesterday while I was stopped.

YIPPEE!! I was so freakin' happy that you are doing well!!

Bye,gotta run again!


Get well!!

ginniebean
10-17-12, 11:32 AM
Amtram, I'm joining in the collective sighs of relief. It's wonderful to hear how fast functioning is returning and I couldn't be happier for you. A speedy recovery and I'm sure you have the prettiest bald head ever. :)

JOHNCG
10-17-12, 06:34 PM
Good for you, AMTRAM!!! Well Done, mate!!!!

Regards,

John

Amtram
10-17-12, 07:37 PM
I had a problem yesterday with "auras" that were similar to the ones that precede migraines, but weren't (thank heavens!) followed by migraines. I expect they'll be a passing phenomenon caused by my visual processing neurons taking a little stretch.

Today was something of a downer, just exhausted and yet unable to sleep. However, I've noticed a few words - specific ones that were getting "lost" more frequently than others - are much easier to retrieve. There's a somewhat disconcerting amount of fluid between my scalp and my new high-tech artificial skull, but I think that's a fairly expected side effect.

Since I couldn't sleep, I spent the day catching up on Season 3 of "The Walking Dead," which is just about the perfect level of intellectual challenge for me right now. . .

Flory
10-17-12, 07:38 PM
Amtram !!! im happy you are on the road to recovery !!

Amtram
10-17-12, 09:49 PM
Something else I just noticed is that suddenly, I'm not startling easily anymore. I was trying to think back to see if there were a correlation between my hypersensitivity and the medications I've been on and off, but it seemed to be a pretty consistent problem for at least a year now, and was still happening the week before surgery. I didn't see that as a function of any of my flattened brain structures, but I'll poke around and see if it might be a thing.

ADHDTigger
10-19-12, 04:51 PM
YIPPEE!!!!!!!!

Been out of the loop the last few days. I am so pleased to see you back and functional!

I've had a seriously hyperactive startle reflex for as long as I can recall. I always thought it was ADHD in action.

Hmm...

Amtram
10-19-12, 10:08 PM
It's not unusual to have some setback from any surgical procedure at about this point, but it still doesn't make it bearable. Nothing's gone wrong, but I'm just really tired and woozy.

Since I'm not medicated, my brain is too busy to let me sleep. Since you're not allowed to take NSAIDS after brain surgery (did you know you're not allowed to take NSAIDS after brain surgery? Now you do!) the arthritis in my shoulder is adding to the sleep difficulties. And what's the thing you need most to recover from surgery? Sleep! Ain't happening, folks, and that makes me mad. Which also makes it harder to sleep.

However. . .some words are coming back. I was really, really worried about the word loss being permanent, or taking years to recover, but I'm finding that when I'm mentally searching for a word, and I manage to find it, it comes back much more easily the next time I need it. The reason I can tell this is that I've had to remember a lot of very similar words for medications and procedures and such, and I've been observing that they pop into my head faster and sort themselves out faster each time I try to recall them.

And speaking of that, I never thought I would ever be grateful for the flood of words gushing in every time I try to express myself. One of the biggest frustrations in communication for me, for my entire life, was that I would stop in the middle of speaking because so many possible words and phrases would mob me that I couldn't pick out the one I really wanted. This always bothered me, because in addition to prompting people to finish my sentences for me (causing MORE words to compete for my attention, and none of them being even remotely correct) it made me sound stupid. When I realized that my word loss had changed from too many words to silence, it was downright frightening. So I might not like the mental chatter, but it beats the alternative by a long shot.

In other news, we had to take one of the cats to the vet today, and the vet asked me about my surgery. (I knew she wanted me to take my scarf off so she could see, but didn't want to ask, because we'd talked about it before!) She looked at my sutures and marveled at the skill of my surgeon. I can't wait to tell my neurosurgeon that my vet admires his work. . .

Lunacie
10-19-12, 10:18 PM
Best laugh I've had for a week - about telling your surgeon that the vet
thinks it was a good job. :lol:

Can you use something like capsaicin cream for your aching shoulder?

I have arthritis in my lower back, and after surgery in a cold room on a
cold table stuck in one position for so long - my back was in spasms.

I was groggy and told the post-op nurse "It hurts" and she said, "I know,
honey, it does hurt when you've had surgery."

But I wasn't talking about the incision hurting, I was trying to tell her that
my back was hurting.

Apparently I got so frustrated I growled at her and scared her, or so my
hubby told me. :giggle:

salleh
10-19-12, 11:09 PM
Growling at a nurse ??? ...I thought I was the only person who growled at people .....and I mean GROWL ...not using growql as a metaphor or an exaggeration ...but actual grrrrrrrrrrrrring ....

...So Amtram ....cannot tell you how delighted I am that your comeback is coming back so fast ....I know, can't be fast enough huh ? .....once you start down that road...you do get impatient ....

and surgery is well....it hurts ....

two weeks after my c-section, I got in my truck ...it was a little truck, but no power steering ....I turned the wheel to get out of my parking spot ....ooooooooo owies ! ...I had no isea that you used your stomach muscles to turn the wheel of your vehicle .....

...This may be the hardest part ....recovery ...cause you now know that the surgery was a success ....and stuff is starting to come back faster and faster .....but it ain't over yet ....soon my friend soon .....

...so gathering together the thing that us ADDers lack ....that is to say ....patience .....wrap that around yourself and hunker down for just a little longer ....

...you are a miracle of modern medicine .....give it time to finish it's work ....


but you are still with us ...and most of your previous problems are going away .....this is just such a good thing .....

well I think I may be babbling by now .......but I do get a big ole smile on my face when I see you posting again ..letmetellyouthis !

Amtram
10-20-12, 01:47 PM
Oh, I also forgot to mention, I'm experiencing less trouble with the calendar concept, as well. I should really start a tally to see if there's a correlation between the time of onset of these symptoms and the time they diminish. Right now, though, I think I need to sleep. . .

ginniebean
10-20-12, 02:52 PM
Damnit, I am just so happy to hear all the good news Amtram! Happy and relieved for you. Really sorry to hear about the lack of sleep tho, I know that has to be rough. Keeping you in my thoughts! :grouphug:

Amtram
10-21-12, 01:53 PM
Something else that's really weird that I hadn't even thought about. . .

I sleep with a box fan going, partly for white noise, and partly because my body temperature fluctuates wildly at night. It's been kind of a joke that even though turning the fan off and on is a regular occurrence, I always, always, always turn the knob in the wrong direction before turning it in the right direction.

I just noticed that since getting home from surgery, I haven't done that once. Is there a brain structure specifically related to doing this task?!?

salleh
10-21-12, 11:43 PM
you mean like .....right and left brain ???????? ....hee hee hee hee...( as in turning the knob right and left ...)

Lunacie
10-22-12, 08:30 AM
Something else that's really weird that I hadn't even thought about. . .

I sleep with a box fan going, partly for white noise, and partly because my body temperature fluctuates wildly at night. It's been kind of a joke that even though turning the fan off and on is a regular occurrence, I always, always, always turn the knob in the wrong direction before turning it in the right direction.

I just noticed that since getting home from surgery, I haven't done that once. Is there a brain structure specifically related to doing this task?!?

I do that with the fan once in a while. I do it pretty often with the hot
and cold faucets in the shower. And have done so for as long as I can
remember. I guess brain surgery isn't going to change that for me, eh?

Amtram
10-22-12, 01:06 PM
Wellllll. . .from where I stand, I wouldn't recommend it unless you really, really needed it!

Lunacie
10-22-12, 01:37 PM
Wellllll. . .from where I stand, I wouldn't recommend it unless you really, really needed it!

Gotcha!

Amtram
10-22-12, 04:31 PM
Oh, BTW, for the curious, I do have surgery pics. Private Message me for the URL.

Amtram
10-24-12, 03:39 PM
Benificence. Obfuscatory. Execrable. Sisyphean. These and many other words have popped into my brain and gone right into my fingers over the last couple of days. No long blank stares at the monitor trying to figure out how to say what I wanted to say when the right words didn't come.

This. Is. Amazing.

Amtram
10-26-12, 09:11 PM
The cerebrospinal fluid that was making the back of my head look like a water balloon has mostly drained off. My neck is still puffy and sore, but now I have hope.

I am understanding the calendar again, not completely, but I'm able to count how many days between point a and point b, and usually get the concept of what's happening next week, what's in two weeks, and so on. I'm no longer confused by the idea that numbers are not in the columns or rows that I expected them to be.

Short term memory is almost back down to normal ADHD levels. When I walk into a room and forget why I was there, I don't have to retrace all my steps for the past hour before I remember. I finished reading two books, and I've made dinner without messing anything up twice. (I've made dinner more often than that, but we're talking about components that need multiple ingredients.)

Lunacie
10-26-12, 09:22 PM
Awesome! Sounds like you'll soon be back to Amtram-normal. :yes:

danelady
10-28-12, 07:53 AM
Amtram,what's going on there? Are you going to evacuate or have you done so already?

Please stay safe and keep us informed!

Amtram
10-28-12, 02:36 PM
We're as prepared as we're going to be. I wasn't able to help all that much in putting things away and securing them outdoors, but hubby and DD#2 managed to finish. Hubby is heading off to pick up DD#1 from school, which is ironically more dangerous than home even though it's way more inland.

Sad to say, while the surgery has helped immensely with headaches in general, it hasn't eliminated my "incoming weather" headaches. I'm torn between concern about the storm and my desire for it to get over here already so my head stops hurting!

Conman
10-28-12, 03:30 PM
im not reading past posts or pages. did you have headaches anyway before surgery and the IM or no?

attention posters on this thread: in 13 years when im finally done with Specialized Training, ill be the official Forum Doctor and fixing people up. BOOM. sorry about that, i just feel all doctory when im here

Amtram
10-28-12, 04:26 PM
I've had incoming weather related headaches for many years, but over the past 9 months or so, I was getting headaches all the time, which was uncharacteristic for me.

Conman
10-28-12, 04:47 PM
ah. i dont think ive ever heard of Incoming Weather Headaches. only the standard ones like the average Headache (Tension), Sinus Headaches which ive never had, Migraines which i am doomed to get by the end of college, and Cluster Headaches which my uncle used to have and luckily is not the common in my family (my grandpa the cardiologist heard how he was unable to leave the bed due to a blinding headache in his eye and he was screaming/crying in adulthood, he rushed over with a freaking Demerol shot...yeah)

Lunacie
10-28-12, 04:58 PM
ah. i dont think ive ever heard of Incoming Weather Headaches. only the standard ones like the average Headache (Tension), Sinus Headaches which ive never had, Migraines which i am doomed to get by the end of college, and Cluster Headaches which my uncle used to have and luckily is not the common in my family (my grandpa the cardiologist heard how he was unable to leave the bed due to a blinding headache in his eye and he was screaming/crying in adulthood, he rushed over with a freaking Demerol shot...yeah)

Only about a quarter of all Migraine headaches are the classic ones,
with the aura, the one-sided pain, and the nasuea.

Some are sinus headaches, some feel like a steel band around the head
that's squeezing, and other kinds.

Some auras are a tingling all over the scalp, or a gut ache, or sensitivity
to smell and taste, as well as major sensitivity to light and noise.

Some are triggered by diet, but as it turns out many are triggered by
weather changes: specifically changes in the barometric pressure.

I became aware of this with my own Migraines about 40 years ago,
and my then-hubby confirmed it as they had to keep track of the
barometer at the evaporation salt plant where he worked.


Amtram, no headache for me yet, probably be Tuesday or Wednesday
before the remnants of the storm system push this far west.

So I will send you good thoughts and healing energies today and maybe
you can return the favor in a couple of days.

Meanwhile stay safe kiddo!

Conman
10-28-12, 05:18 PM
im at 40% risk for Migraines since my mom's side has them and my brother does. she has all them all the time, my brother's had 2 we know of in his youth. he got his at 15, she got hers at 21/22. i get Tension headaches that feel like a weight is strapped to my head, occassionally it's the back and makes my eyes feel like they'll blow out. i get Auras though, i see the Visual Snow. never equated it with being a known Migraine Aura until i had a normal Tension headache but saw Visual snow, then i made a connection and looked it up.

Amtram
11-04-12, 09:35 PM
As my memory gets to be a bit more reliable, I'm now dealing with the aftereffects - getting hit with huge blanks in my memory from before the surgery, hubby and kids mentioning things and reminding me of stuff I did or said of which I have no recollection whatsoever. Still incredibly tired, incision isn't healing as nicely as I would have liked, so I'll be letting the hair grow back.

Conman
11-04-12, 10:16 PM
are you doped up on opioids?

Amtram
11-05-12, 08:26 PM
Nope. In fact, I was already taking nothing but Tylenol for pain before I left the hospital. I was given dilaudid for pain right after the surgery and a couple of times after when we discovered that I'm immune to morphine, but for the most part I did OK once a few tubes came out and my enormous headgear was removed.

The blanks I'm drawing are from the months before the surgery - more of them closer to it, when all the other symptoms were also escalating. I was already aware that my memory was significantly worse than usual, and it was harder to find triggers for recall that used to work. I spent A LOT of time standing around wondering why I was where I was, what I was doing that brought me there - you know how when you walk into a room and forget, but if you go back to where you were before and it comes back to you? That was no longer working. I wouldn't even remember where I had been before to go back there and look for whatever it was that made me go wherever it was I had ended up. Now I'm back to blanking for a moment, sometimes having to retrace my steps, but frequently being able to do that mentally instead of physically.

There are just some things that I'm discovering are gone, and they've been small, so it hasn't bothered me too terribly much. For example, I had purchased a replacement beater for my stand mixer, because the original was chipping. I got one with a rubber scraper on the side, but found that it didn't work for large batches of batter. I was out with hubby and saw a display of my brand of mixer and said that I should look for a replacement beater that didn't have the scraper, and he told me that I'd already ordered it, even used it. Really? I went home, found it, looked it over, and even though clearly I had the new beater, I had no memory whatsoever of ever having seen it before, or of throwing the old one out. Everything related to this particular item just doesn't come back at all.

There are posts I've made here and things I've written elsewhere that I come across and have absolutely no recollection of ever having thought. Not all of them, but enough to make it seem kind of Twilight-Zone-esque. I mean, it's not like rummaging through old school papers or letters or things and not being able to remember the details, or being able to piece together a few long-forgotten memories. It's like someone else must have written these things, but at least they took the time to get to know me and didn't embarrass me too much. Very bizarre.

Lunacie
11-06-12, 09:26 AM
That happens to me all the time . . .

Unless I notice my user name at the top of the post I will read it and think

"what an interesting perspective" or "well I already knew that", something

like that. And I wonder who wrote the post and LO! there is my name!


I can reread books as if I'm reading them for the first time.

Watch movies as if I've never seen them before.

I don't think brain surgery would help me though. :rolleyes:


I expect those blank spots in your memory will always be blank -

the thought or event didn't get "recorded" as it were.

But now new thoughts and events DO get recorded, so YAY!

Amtram
11-08-12, 03:16 PM
Since tomorrow's a long day (going to a show at the Philadelphia Museum of Art with the whole family!) and I'm still just so tired and out of it during the day, I thought that it might be a good idea to take a small dose of my Adderall XR just so I could get through it.

Potential problem, though, is that in the past, whenever I took Adderall without the benefit of also being on a well-established regimen of an SSRI, it gave me anxiety and panic attacks. So, since my brain is working so much better now than it did before surgery, I actually thought about this beforehand and took a small dose today.

N.B., my doctor had already worked it out with me that I can divide up my capsules for smaller doses, since I found that two doses spaced 3 hours apart worked better than a larger single dose, and my insurance company won't give me 60 pills a month even if the number of milligrams works out to be the same.

So. . .divided up 25 mg into two gelatin capsules, took one this morning. None of the euphoria that comes along with taking it for the first time, thank goodness. Barely noticeable heart palpitations (palpitations not being abnormal rhythm, but simply the sensation that your heart is beating harder or faster, FYI) and no noticeable anxiety. Then again, since I was able to think of one thing at a time once it kicked in, I found plenty of things to keep myself too busy to get anxious.

I still could use a nap or two or three, but I don't feel like I'm going to cry if I don't get some sleep already!!!

It's not a definitive measure of whether I'll be able to take this without an antidepressant, because I'm right back to ruminating instead of sleeping, but it's nice to know that it still works and I'll be able to enjoy my day tomorrow.

Oh, and another post-surgery change that I just noticed is that the constant music loop that was always in the back of my thoughts is not always present anymore, and is a little easier to ignore/dismiss. It still pops up first thing in the morning, but it doesn't dominate everything else.

danelady
11-08-12, 03:19 PM
Already going on an outing! Woohoo! Have a glorious time,hope you feel well,and be careful on the roads!!

Amtram
11-14-12, 12:12 PM
Well, I have discovered the approximate point when all traces of antidepressant medication have left my system. *sigh* Besides the return of depression symptoms, I'm actually experiencing occasional small brain zaps - miniature versions of the ones you'd get from SSRI withdrawal. Usually they're brought on by movement like turning around or stopping after walking, but occasionally they just happen.

I'm trying to remind myself that there is still a lot of healing left to go, that if my incision is still not done and I still can't move my neck all around because of cerebrospinal fluid, it's unreasonable to think that my brain is all better. That works for a moment or two.

Word recall, which had improved greatly, now has intermittent glitches. I'll go blank on a word that I'd used regularly, but it'll come back spontaneously, apropos of nothing, in the next 24 hours. Sometimes the same word will come and go over the course of several days.

The show was wonderful, but huge, and I paid the price for it. The day was much longer than I was ready for. The creative ideas were incredibly overstimulating, and I couldn't sleep for more than a few hours at a time - still having trouble with that. When I tried to replicate a technique, I had so much trouble trying to figure out all the steps and put them in order (plus plenty of time to beat myself up while waiting for components to dry or set) all it did was frustrate me. I don't know if that's a recovery thing or an untreated ADHD thing, but it was definitely helped by sleep deprivation.

Two days of small doses of Adderall were OK, but the third day brought back increased anxiety, so we're not going to be playing around with that. I see the psychiatrist on the 26th for re-evaluation. We'll see how that goes. For now, I just do pretty much nothing useful, which makes me sad, but it's how it has to be for a little longer.

ginniebean
11-14-12, 12:56 PM
((((hugs))))) I'm sorry you're sad Amtram, I know how hard it is to do nothing but heal, I'm glad you got out and had a good time, even if it taxed you. It let's you know in real terms your limits.

You'll recover, not as fast as you want, and there may always be some pieces missing but it will happen. It's hard to have patience so come on here and let us entertain you and be a shoulder when you need it.

Amtram
11-14-12, 03:49 PM
Hey, in some ways it's good to know that at some point I'll be back on meds and feel like myself again, and in other ways it's bad to know what I could feel like because it's different from how I feel now. It's just a waiting game, and I hate waiting.

However, with each day of lazing in front of the television, I learn a few more words of Hindi. Heh.

Drewbacca
11-14-12, 04:50 PM
It's just a waiting game, and I hate waiting.


You should see a doctor, you might have ADHD. :giggle:

Conman
11-14-12, 07:29 PM
Well, I have discovered the approximate point when all traces of antidepressant medication have left my system. *sigh* Besides the return of depression symptoms, I'm actually experiencing occasional small brain zaps - miniature versions of the ones you'd get from SSRI withdrawal. Usually they're brought on by movement like turning around or stopping after walking, but occasionally they just happen.

The show was wonderful, but huge, and I paid the price for it. The day was much longer than I was ready for. The creative ideas were incredibly overstimulating, and I couldn't sleep for more than a few hours at a time - still having trouble with that. When I tried to replicate a technique, I had so much trouble trying to figure out all the steps and put them in order (plus plenty of time to beat myself up while waiting for components to dry or set) all it did was frustrate me. I don't know if that's a recovery thing or an untreated ADHD thing, but it was definitely helped by sleep deprivation.

Two days of small doses of Adderall were OK, but the third day brought back increased anxiety, so we're not going to be playing around with that. I see the psychiatrist on the 26th for re-evaluation. We'll see how that goes. For now, I just do pretty much nothing useful, which makes me sad, but it's how it has to be for a little longer.

What do you mean by 'brain zaps', and what are the effects of SSRI withdrawal? i cant remember if i experienced withdrawal when i took myself off Fluoxetine in gradeschool.

What show? im not looking at the past pages since im lazy and have work to get to soon.

is the Adderall for your AD/HD (i dont know which one you are) or for some reason pertaining to your surgery?

Amtram
11-15-12, 11:49 AM
Conman, it's hard to explain "brain zaps" to someone who's never experienced them, or who's never experienced fainting, but I'll try. It's very similar, also, to what you might experience if you were foolhardy enough to stick something metal into a wall outlet, although less intense. When you're about to faint, you know it. Time stretches out, the world starts to spin a bit, you see spots that become like a screen of snow, you experience the sensation of falling, and then the next thing you know, you're coming to on the floor with no memory of how you got there. A brain zap is like that happening in real time but without the falling on the floor.

The show was the Philadelphia Art Crafts Show, which was at the Philadelphia Convention Center. It was an enormous thing, with hundreds of amazingly talented artists doing things I only wish I could. (Actually ran into an old friend there, who offered DD#1 an apprenticeship in her studio. . .) We saw everything, and that involved hours of walking and standing, and everything that caught my eye got me thinking about things I would love to do myself. Just too much, physically and mentally.

The Adderall has been my ADHD medication for most of the last 6 years, and the best one, but I was advised by both my neurosurgeon and my psychiatrist to hold off on everything but pain medication and xanax for sleep until I'd had enough time for my brain to heal up some. The neuro expects that even though we'll see a lot of changes by April, I might not be done actually recovering for a year, maybe more. However, 6-8 weeks post surgery is OK to begin taking my other meds, whatever they turn out to be. Because my brain will have experienced structural changes, the medications might work differently, and I might end up on a completely different regimen than any that I've had before.

Amtram
12-01-12, 12:18 PM
Recovering from this is nothing at all like recovering from other kinds of surgery. Hoo-wee! Things get better, then a little worse, then kind of better, then something else changes. . .

I still have an accumulation of cerebrospinal fluid in my neck, but apparently I slept on my back long enough to mash it back up to my skull. There is definitely a difference in the healing between my scalp over the bone and my scalp over the plastic. The fluid is over the plastic part, and it's like there's a water balloon under my skin.

Words come and go sometimes. I'll read a word and have no trouble comprehending, but when there's a good sentence to use it in, I won't be able to pull it back up.

Last night for some reason I was thinking of the TV show "Community." I was trying to remember the names of the cast members, which should have been easy since I've seen every episode and the opening credits are very visual. For those who haven't seen it, it's a folded paper cootie catcher/fortune teller with the actors' names and little pictures in plain blue crayon-like font revealed as the paper unfolds. I could visualize only one name, and while I could replay the sequence in my head, all the blue crayon was disjointed lines and scratches instead of letters and pictures. Even after finding other ways to remember the cast, this visual didn't change at all.

Lunacie
12-01-12, 12:46 PM
Were you able to remember things like before?

I've layed awake many a night trying to remember the names of cast
members from favorite shows - and lucky to remember a couple.

Remembering names and faces has always been difficult for me to do.

Amtram
12-01-12, 04:59 PM
It's hard to explain, Lunacie. I still am finding that my innate mnemonics (which are pretty much all visual) are working as I form new ones, it's just that some of the ones that worked before surgery seem to be a little less dependable.

Not all the time, either. It seems that once I've managed to mentally reconstruct the visual image, it comes back to mind the next time pretty easily. It's not quite like starting from scratch, but I'm very aware that a memory that existed is broken or partly gone.

The words I'm a little more patient with. A lot of the blanks that come when I'm writing can be filled in with a Google search, and I haven't been doing much talking since I'm not terribly comfortable with driving and getting out yet, and so tired I don't like being on the phone. (Tried it with my Mom, and it wore me out because I kept losing track of the conversation.)

The strange thing though is that it really highlights that the language areas of the brain that understand and the language areas that produce can work so independently of each other even though you'd think they have to cooperate. They communicate, but one can be broken and the other fine and you still have a piece of your language function. I don't know a better way to describe it. . .

Lunacie
12-01-12, 05:01 PM
Interesting.

But I'm sure it's very frustrating for you.

Amtram
12-01-12, 09:42 PM
It's frustrating, but paying attention to it and trying to figure it out keeps me focused on the progress. Being able to see what has changed and when reminds me that it's not all just frustration.

Amtram
12-17-12, 12:03 PM
Again, I'm finding that the recovery process is hugely frustrating. The name forgetting is a problem with real people as well - after spending an hour chatting with one of my fellow band mom friends, the next day I completely blanked on her older daughter's name - a name I had known for many years and had been using in conversation less than 24 hours beforehand. Once I had consciously made the effort to re-establish the association between the person and the name, it was right back as if it had never been forgotten.

I'm having some discomfort being out in public with sensory overload. I'm not sure how much of this derives from the long confinement to home and the onslaught of shiny, sparkly decorations and inescapable christmas carols and how much of is is because I'm still having occasional problems visually processing movement. That part is better enough that I feel safe driving, but things look different in a way that I don't think I can accurately describe. Obviously, edges of things are more distinct and my peripheral vision is back, but there's something else I can't quite put my finger on.

In other news, I decided I just couldn't wait until April to get a new glasses prescription. With the pressure off the back of my eyeballs, my glasses just weren't working. Before I knew what was wrong, I was sent to a specialist because my eye pressure was very high - now it's well within normal in both eyes, and no longer a concern. Plus, the astigmatism in my left eye (the one that was most badly mushed) has disappeared. And, because the prescription change was caused by a medical condition, my insurance actually paid for the exam and the glasses. BOOYAH!

Lexapro is beginning to take a slight edge off the depression, but it's only week three. I still can't wait until I can get back onto Adderall, because my days are just a haze, but that has to wait a bit.

Fortune
12-17-12, 03:26 PM
I am glad to hear about improvements. The adjustment period and the remaining negatives suck. :(

Amtram
12-29-12, 01:48 PM
New change that I noticed, and this I think is directly related to the pressure on the occipital lobe.

First, yesterday was a day of sleep. I was so exhausted that I went back to bed after breakfast (which was at 10:30, already at least three hours later than usual) and slept until 2:30-something. I was stunned when I looked at the clock. But with incoming winter weather, my head is achey and swollen anyway, and the cerebrospinal fluid balloon under my scalp is enormous.

Hubby and I decided to go to a mall and go walking to get out of the house and get some exercise. It was good for me, but a bit much, as I was losing my balance towards the end.

However, the two significant things I noticed were, first, that my eyes were steady, and second, that I was not as sensitive to LED lights on the highway.

Prior to surgery, when I was overtired, my eyes would actually physically roll around. I would get cross-eyed and dizzy if I didn't make a concerted effort to keep them in the same direction. So I'm guessing my occipital lobe is feeling much less stressed.

I also had a great deal of trouble with night driving before surgery because I perceived the flicker in the LED taillights of cars. Not so bad with most foreign cars, but really, really awful with Cadillac Escalades. Taillights on those looked like marquee chaser lights to me. Unfortunately, nobody seemed to be driving one of those last night, so I don't have that as a comparison, but none of the other LED taillights (or the brandy-new LED road signs) were as annoying as before. Again, this is related to visual perception, housed in my recently un-smushed occiptal lobe.

There are a lot of things I'd prefer to see vast improvements in, but I'll take what I get!

Amtram
01-10-13, 10:49 AM
I just wanted to add an update regarding the memory issues, because I've put my finger on what's happening in a little more concrete way.

My memory has always relied on triggers. If I forget something, I can usually work around with associations, usually visual, and eventually pull up what I want. I know that the thing I'm looking for is kind of tickling around the edges, just hidden from view. I might not be able to pull it up right away, but I know it's in there somewhere.

I know I mentioned this blanking before with names, but I had a very specific illustrative experience this morning that I wanted to share.

For some reason, I have no idea why, I was thinking of that guy who was in charge of Iraq. You know, the one the US put in charge and who was supposed to have weapons of mass destruction and tortured people and set Kuwait on fire and had a magnificent palace and was found hiding in an underground hole called a spider hole and whose disheveled mug shot was all over the place and who made that long crazy rant before he was hanged and whose two sons were also killed. . .you know, that guy?

I could recreate the series of events in my head. I could see every single picture, recall all the videos, even re-hear certain news snippets, but no matter what, his NAME was nowhere to be found. This is not some obscure, forgettable person. This is recent and historically significant.

And this name was not hidden, tickling around the edges of my memory, playing a game of hide-and-seek with me. His name was not missing, it was gone as if it had never been there. All my knowledge and memory of him was perfectly intact, except for his NAME.

I was about to google it, but my daughter was home, and (obviously) immediately supplied me with "Saddam Hussein." At that moment, I experienced what I can describe only as a rush, because it was like a WHOOSH as all those sounds and visuals that had been empty of that name had the blanks filled in. Even the names of the sons that had been blanks were back where they'd been missing before.

This is different from forgetting. And it's limited to names for people and things. I'm not blanking on verbs, adjectives, adverbs, only nouns, and primarily names and proper nouns.

It's consistent with damage to the syntactic processing areas of my brain that were compressed by the tumor, but it's interesting that the deficits are appearing as I recover moreso than they existed while the pressure was on. It's also interesting that when these "blanks" are filled in, it's like the memory gaps are filled "en masse."

If it weren't so generalized, I would wonder if there's a correlation between which memories are compromised and the time at which the tumor began to affect my verbal processing. I guess I'll never know. I'm going to have to go do a little more research on how the brain goes about naming things and maybe I'll figure a few more things out.

Subtract81
01-10-13, 11:03 AM
The weird and wonderful world of the human brain!

Amtram
01-10-13, 11:32 AM
This paper (http://www.academia.edu/169612/Vocabulary_and_the_Brain_Evidence_from_Neuroimagin g_Studies) is by a graduate student, and some of the citations are a little older, but it was interesting because it subdivided language functions by area a little more than many others I've read.

One of the things that seemed to make a little sense to me was that in the various areas of the brain in the language loop, there seems to be linked functions for naming and object recognition. Looking at the scans, though, I'm surprised that I'm having more trouble remembering names for faces than I am remembering names for tools. . .heh.

If everything were so simple, though, I'd be showing more signs of Wernicke's aphasia - but my receptive language in both speech and reading seems to have suffered no effects at all. What may be happening is not so much an actual injury to any particular naming area of my brain, but a rewiring of the connections between various speech and recognition areas that were interrupted or rerouted while the pressure was on.

Before the seizure and the surgery, I was experiencing the word loss, but it was of the "hiding" variety rather than the "lost" variety. I was aware that I couldn't remember, and the frustration level was different because I knew the word I was looking for was in there somewhere.

Now, it's actually not as frustrating, but I think that's partly because I understand it. I don't spend as much time digging around in my head for the missing name or word, because I know it ain't coming.

Before, I would forget the same thing over and over. Now, the blanks are bigger, but once they're filled in, they stay filled in.

This actually is a good thing. In the case of traumatic injury or other brain lesions, function doesn't get restored like this. I believe I cited Bradley Voytek before from this post (http://blog.ketyov.com/2011/03/why-we-dont-need-brain.html) on Oscillatory Thoughts, but I'll link it again just in case. It answered some questions regarding injury and plasticity that I try to keep in mind when I feel like this process is taking *******' forever. It reminds me that I was pretty darned lucky, and there's a light at the end of the tunnel.

Subtract81
01-10-13, 11:52 AM
I take it you have looked at neuroplasticity?

Amtram
01-23-13, 11:37 AM
Again with the ups and downs!

Two days ago, I could not stay awake. I had breakfast, went back to bed, woke up briefly in the afternoon, and then slept until 5PM. I never, ever sleep like that.

Yesterday, the stuttering and word loss was back again, along with a mild vertigo and loss of balance. And while the collection of cerebrospinal fluid under my scalp has gone down some, my neck was stiff with it. There's one little crater at the base of my skull behind the top vertebra, and from that you can see how much fluid has accumulated.

However, each time these particular symptoms recur, they're slightly less severe than they were the time before.

A few days before this, I decided to try a different route to a store that's a bit out of the way, but worth the trip. I made one wrong turn, but instead of being completely disoriented and frustrated as I was back in August, I remembered essentially where I was and figured out where my wrong turn would take me, and got where I was going.

It was the first time I'd tried going an unfamiliar route since that August trip, and the improvement in my spatial orientation ability was vast. Yay!

Yesterday, however, I had a number of moments of standing someplace in the house and forgetting which way I was going. Still not as bad as before.

I have a feeling that today will be another day in bed sleeping. When the fatigue hits, it's really intense. I don't like sleeping the day away, but the brain is calling the shots here.

Lunacie
01-28-13, 11:18 AM
After watching the latest installment of Downton Abbey on PBS last night

the next program was about ... Aphasia. :yes:

Unfortunately it was late (for me) so I didn't take in a lot of it.

And of course, most of the information was relating to people who develop

aphasia following a stroke, with some about aphasia following a trauma,

and a small part about progressive aphasia.

Seems like you're a pretty rare case, Amtram.

But that just makes you more special and endearing, eh?

Amtram
01-28-13, 11:39 AM
Thank you, dear. My aphasia, fortunately, was not caused by a Traumatic Brain Injury, so there can be some recovery. I have days when it's worse, days when it's not there at all. When I get my followup MRI in April, we'll have a better idea of how well my brain has re-expanded into the skull, and also be able to get a look to see if the long-term pressure actually caused any lesions.

It's hard to tell from my first set, because the lesions would look similar to some of the compression of veins and arteries, and even possibly be obscured by them. Once they're spread out again where they're supposed to be, that won't be a problem.

The fact that the word loss is largely corrected by "relearning" the word is very promising, though.

The other day, hubby was out grilling himself some hot dogs. In the cold. That man loves his grill. He came in and I was looking at the refrigerator door trying to apologize that we didn't have. . .that stuff for hot dogs. . .kind of white and stringy. . .cabbage. . .not kim chee. . .

He said "sauerkraut," and now I remember the word right away without searching for it.

I did not remember it well enough to pick some up at the supermarket, though.

Lunacie
01-28-13, 11:46 AM
Well, the Aphasia will hopefully go away, but there's no hope for the ADHD, eh? :giggle:


That sounds exactly like some of the characters in Terry Pratchett's books.

Is it still called Aphasia when it's in concurance with Alzheimer's?

It seems that some of the characters in Terry Pratchett's books may

reflect his own battle with Aphasia/Alzheimer's.

Amtram
01-28-13, 01:17 PM
Yes. An aphasia is a specific thing, and it's directly related to the function of the affected area of the brain. It's also similar to agnosias, also caused by an interruption of function caused by injury or trauma to one particular area of the brain.

mildadhd
01-29-13, 11:22 AM
Well, the Aphasia will hopefully go away, but there's no hope for the ADHD, eh? :giggle:


That sounds exactly like some of the characters in Terry Pratchett's books.

Is it still called Aphasia when it's in concurance with Alzheimer's?

It seems that some of the characters in Terry Pratchett's books may

reflect his own battle with Aphasia/Alzheimer's.


Lunacie,

Dr.Barkley said that 1 in 6 (and even maybe 1 in 3) do grow out of ADD.

Is he being rude to?

Lunacie
01-29-13, 11:33 AM
Lunacie,

Dr.Barkley said that 1 in 6 (and even maybe 1 in 3) do grow out of ADD.

Is he being rude to?

I don't understand the question.

Fortune
01-29-13, 10:35 PM
Lunacie,

Dr.Barkley said that 1 in 6 (and even maybe 1 in 3) do grow out of ADD.

Is he being rude to?

I think Lunacie meant that Amtram is never going to outgrow ADHD, which is the truth. People who do outgrow it tend to do so by their late 20s.

Amtram
02-08-13, 06:12 PM
I have definitely not outgrown my ADHD. If I did at this point, I'd be pretty peeved. Outgrowing it in my 20s would have been dandy, but outgrowing it in my 50s would be like a slap in the face.

Amtram
03-07-13, 03:06 PM
I've been keeping this diary in a more cumulative form, so this update is long and covers several weeks:

1/30
Another day of mostly sleep, so far. Over the last couple of days, I've been having a little trouble with my balance again. Nothing as bad as before, and it seems to be more physical balance than spatial orientation. Something really weird happened, though, for the first time ever.

I was lying in bed, on my left side with my right arm and leg luxuriously stretched out into the space normally occupied by my darling husband. Suddenly I felt a cat jump up onto the foot of the bed, walk along the edge for a bit, then jump off. Then I felt a cat jump up onto the bed close to my elbow, walk around my hand, up towards the pillow, then jump off.<!--more-->

Only thing is, the cats were closed out of the room. I stayed still and tried to observe the phenomenon. The feeling of something putting pressure on the mattress below my hand/foot was not accompanied by the pressure from above that you'd feel with something that was on top of the covers. The feeling of the pressure from above, as if something were on top of the covers, came right after, and wasn't accompanied by the feeling of pressure on the mattress below. The "walking away" really did just feel like a cat walking up the side of the bed, from foot to head, then suddenly stopping.

The sensation continued, decreasing in frequency rather than intensity, then stopped. Weird.

2/2
I have spent the last two days sleeping intensely. Like, wake up, eat, sleep until lunch, go back to sleep, wake up for dinner, then back to bed. Two nights ago, I fell asleep sitting up with the TV going. People who know me will find this stunning, because my insomnia is world-famous. The only thing that's keeping me from going back to bed right now is that I have to go out and get a prescription filled.

The weather doesn't help, and adds a headache on top of all this. The collection of cerebrospinal fluid under the left side of my scalp had gone down to just one little saggy part at the base of my skull, and it was so nice to feel it lying flat near the crown of my head. Not anymore. Yesterday it was back to a giant balloon, and my neck was so swollen with it that it hurt. It's down a little today.

I've also had a couple of incidents of stuttering and word loss. . .it all seems to go together.

Starting to realize, too, that I may have been having effects from the tumor for at least 6 years. Little things I dismissed as being caused by something else, things I didn't notice because they progressed so slowly. It was probably one of the reasons I had so much trouble making that prom dress a few years ago - the spatial relations were already impaired, and each time I made a mistake, I absolutely could not figure out what I had done wrong. Not the kind of thing that happens under normal circumstances when you've been doing something for more than 40 years. Just now realized that's probably why I found the idea of helping a friend with an SCA gown downright frightening. Once it got past the doing the math and making the paper pattern and going from 2D to 3D, there was an unconscious awareness that it just could not be done!

2/4
Yesterday I read an interesting article. None of it looked familiar at all, but when I went to the button to share it on facebook, it was greyed out and said "You and xxx people liked this." No memory of reading it, no memory of sharing it, no matter how I racked my brains.

The difference is that this time I just shrugged it off. This kind of stuff is going to happen, and there's nothing I can do about it, so I might as well just roll with it.

2/10
This was something noticeably, majorly different. I planned to take DD#2 shopping for clothes, and wanted to make sure that I remembered the ways in and out of this mall, since it's not a regular trip.

I looked at the map. I understood it. I had the entire concept of where it was in space, which way I would have to turn to get in or out of the various exits, and what my alternate routes were. I don't think I can fully express the disconnect that existed between where I was, and where everything else was relative to me before the surgery. I could look at a map that was set up in a simple grid, with the street signs on all sides of me completely visible, and still not know where I was and in which direction I should go to get where I wanted to be. It is a sensation that is so bizarre that it defies description. It is nothing at all like being lost - it's more like not being in a place where the rules of physics even apply. Even a line from point A to point B is more like navigating an Escher landscape.

We got to the mall just fine. I didn't remember where all the places were, but even when we entered a store through one door and exited through another, I knew where we were relative to where we were and where we wanted to go. I knew where the anchor stores were, relative to one another. When we took a staircase between levels and needed to go to a store on one level that didn't exist on the other, I knew which way to turn at the end of the stairs.

This is such a simple thing to take for granted if you've never had to live without it.

2/25
Obviously, as time goes on, there will be more spacing between updates. Changes are not so dramatic. I still need to sleep a lot. I am getting fewer headaches, and they are less severe, but I get bouts of sharp pains in my head. The cerebrospinal fluid under my scalp increases and decreases, and the more of it there is in my scalp, the more there is in my neck.

I'm actually finding occasional episodes in which I'm able to retrieve a lost word on my own, searching my memories without outside assistance. I remembered that the Spanish word for "peas" is "guisantes" today, after mulling it over for about 18 hours or so. That's actually a bigger thing than it sounds like. Kind of monumental, actually.

3/7
My neurosurgeon approved starting up again on Adderall. My psychiatrist and I agree that Cymbalta is addressing my depression well, but I'm experiencing my ADHD symptoms again now that there's a little less impairment from the tumor. I'm wary of mistaking symptoms that are taking place during recovery as symptoms that can be pharmaceutically addressed. That's what delayed diagnosis of the tumor for so long. When it comes right down to it, though, they're almost identical to the problems I've had all my life, and I'm really not too keen on letting them call the shots.

No question, Adderall XR works well for me. We're starting at a very small dose and titrating up. 5mg first thing in the morning, 5mg more three hours later. The improvements are obvious. Bit by bit, the brain chatter quiets down. I can look at a to-do list and actually do a few things. Without the meds, the to-do list becomes so large that it seems insurmountable, and nothing gets done. Without the meds, I haven't got a firm enough grasp on the passage of time to be realistic about what I'm able to accomplish.

Still, though, a lot of things seem too intimidating or as too time-consuming to begin with my limited energy and concentration. I get that paralyzing gut feel looking at them or seeing them on the list. . .the idea that I would start them and leave them unfinished (to join the long list of other unfinished stuff) creates an emotion that is very close to fear.

Realistically, the solution would be to change my expectations, plan things in an organized fashion, do what I can, and ease up on myself. ADHD and realism do not happily co-exist. And whether it's because of the slow pace of recovery or the low dose of Adderall, I find myself frequently staring at a fairly straightforward task, confounded about what step comes next. Disorientation still comes at me in fit and starts. Memory is unreliable. Physical exhaustion comes on with different amounts of activity every day.

On the days when it seems that having the surgery meant simply trading one set of impairments for another, I hide under the covers. Sometimes I need the sleep, sometimes I need a place to hide from outside stimuli. I know that I need to accept things as they are day by day, but the unpredictability of what each day will bring carries a certain level of trepidation that I can't seem to overcome.

Lunacie
03-07-13, 04:50 PM
Interesting. I can see why you thought it was mostly the ADHD for so long.
It all sounds very much like my ADHD and Fibromyalgia - magnified by 100.

Amtram
03-07-13, 08:39 PM
Hubby pointed out to me that I hadn't written about immediately remembering the name of Clara Peller last night when watching a show that used the phrase "Where's the beef?" He reminded me of this tonight when I was getting upset from a sudden onset of aphasia - words just weren't coming out. It was horrible. This is sometimes like a roller coaster ride.

Lunacie
03-08-13, 11:59 AM
Inconsistency . . . dontcha hate it?

As bad as the inconsistencies are with my oldest granddaughter (ADHD)
they're much, much worse with my youngest granddaughter (Autism).

Sometimes we need someone else to point out that even when we take
two steps back, there was also some forwards progress to celebrate.
Everyone notices the problems more than the successes.

Amtram
03-08-13, 12:37 PM
You've got that right. The one thing that I do notice, still, is the correlation between the amount of fluid under my scalp and my functionality. There's definitely more fluid back there and more headache and more impairment when weather's coming in - I know you have the weather predicting sinuses, too, so you know what I mean. I don't know whether sinus swelling pushes cerebrospinal fluid out of my skull and into my balloon scalp, but it certainly seems like it.

Rarely, I'll find myself experiencing balance or spatial relations or aphasia issues without the increase in fluid, but most often the two things happen at the same time.

Lunacie
03-08-13, 12:52 PM
Simply having my sinuses swollen seems to make me foggy headed as well.
Again, I'm sure your symptoms are magnified over mine.

Amtram
03-12-13, 10:38 AM
Maybe, maybe not - I don't have pain issues!

However, hubby was concerned about my disorientation, and when I realized yesterday that some of it was being caused by my vision, he had me call the doctor. I'm going to see him first thing tomorrow morning. The pressure is bad enough that I can't see clearly through my brand new glasses with my left eye, and everything looks wonky when I have both eyes open.

So we shall see. I would kind of like to at least have my scalp drained off, but that might be asking too much!

Lunacie
03-12-13, 11:56 AM
Sending good thoughts for the doctor's visit. :)

Amtram
03-15-13, 12:26 PM
The MRI was. . .interesting. My left hemisphere has clearly stretched itself back out quite a bit, but you can see that the gyri and sulci (the folds and bumps of the brain, respectively) are distorted, and there's something that looks like fluid accumulation between them in certain areas. My left frontal lobe is swollen or distorted or pushed somehow by fluid, and you can see that it is pushing on my right frontal lobe by the curve in the gap between the hemispheres.

My occipital lobes seem to be quite happy with their new freedom, as my visual perception seems to be working just fine. It's my left eye itself that's affected, and I'm wagering that it's because of the pressure from whatever it is that's distorting my left hemisphere.

My short-term memory has really taken a hit, but I can remember things when I'm reminded of them. This is an improvement over not being able to recall things at all, but it's still frustrating to not be able to retain them voluntarily.

Looking at the MRI itself gave me a reference point for the improvement in my spatial relations - before surgery, looking at the scans, it was nearly impossible to orient myself as to what was where. When you look at these scans, it is as if you were looking at another person, with left and right reversed. Before surgery, I couldn't get beyond the perception that it should have been a mirror image. The axial (horizontal) scans start from bottom to top, and the saggital (back to front, like an arrow shot by saggitarius!) scans go from left to right, and the coronal (side to side, like a crown!) scans go from back to front. I started off looking at this second set having the same difficulty grasping that as I had before, but slowly began to be able to put left and right, front and back, and bottom and top in their correct relative places.

I have to figure out how to compare the before and after shots side by side, but I'm not in a rush to do that right now. The neurosurgeon will have better insight on that come Tuesday.

Amtram
03-19-13, 05:50 PM
Well, I'll be going off to the hospital again. And my hair was growing in so nicely, too! My brain looks good, according to the neurosurgeon, but I sprung a leak between the bone and the new and improved plastic skull assembly. That needs to be looked at and patched, and I need a shunt to siphon off all the cerebrospinal fluid that's in my neck and under my scalp. It's not going to go away by itself, and it's the reason I'm in pain.

The only bad news is really that the pain level for the first week of recovery is going to be pretty bad - but that's better than living with what I'm feeling now for the rest of my life. The surgery itself is pretty simple for this doctor, and will take less than 2 hours. And he made a note that I don't respond to morphine, so I'm actually a lot less concerned about the pain, anyway.

The adventure never stops. . .

Lunacie
03-19-13, 06:50 PM
Have they scheduled the surgery yet?

I will keep a good thought for you that this will take care of the problem -
as well as prevent any further problems.

Amtram
03-19-13, 07:13 PM
I'll probably find out dates tomorrow. There's a small chance that there will be more fluid at some point, but the doctor's pretty confident that this will work.

I was hoping that I would continue to improve as the pressure eased, but this might be the best that it gets. Still better than before, but I was really hoping for super powers or something.

Amtram
03-21-13, 09:36 PM
Figured I'd put this up to show what the problem is. Simply draining off the fluid won't help, because cerebrospinal fluid is produced constantly, but reabsorbed only when it's inside the skull. So the gap needs to get sealed up, or fluid will just continue leaking out and accumulating in my neck and the back of my head.

In the meantime, I have found that hydrocodone isn't a terribly effective pain medication for me, either. It's better than any of the OTCs I've tried, but I don't know if the slight difference in pain relief is worth the sedation.

http://i820.photobucket.com/albums/zz128/Amtram/cerebrospinal-fluid-leak_zps9ebb473d.jpg

Lunacie
03-22-13, 09:23 AM
So, basically you have a "leaky brain"? That can't be good.

Sorry, bad joke, still hoping they can get this fixed with a minimum of fuss.

Amtram
03-22-13, 01:00 PM
Well, for the doctor it's a "minimum of fuss." For me, not so much. But it's way better than not doing it. I tried to make a joke of it with my mother that I needed this like I needed a hole in the head, but she wasn't biting.

Lunacie
03-22-13, 01:38 PM
As a mother, I can understand that. But as a friend, it makes me giggle.

Amtram
04-02-13, 08:30 PM
What is interesting right now (well, interesting isn't quite the right word, but it'll do) is that the fluid leak is causing some setbacks with symptoms that I was having when there was too much pressure. Nowhere near as bad as before surgery, but the fact that I'm having occasional word loss, balance and physical orientation, and memory, is kind of irritating, since it was getting better.

However, consult with the doctor today, and it looks like fixing it should be a little less invasive than originally thought. I will be bald again. *sigh* The surgeon will decide how large the incision needs to be once the hole is exposed, drain off the fluid that's accumulated outside my skull, and patch with the same surgical cement that was used to replace the section that was cut out in the first surgery.

I will probably need a shunt, but it will be a lumbar drain, and will not go into my brain, which was a possibility. The consensus of the doctors is that the fluid in my ventricles (http://www.buzzle.com/images/diagrams/labeled-brain-diagrams/brain-ventricles.jpg) is good. The lumbar drain is a small tube that's inserted into the spinal column just like an epidural, except that stuff comes out instead of going in.

Cerebrospinal fluid is supposed to run up and down the spine (cerebrospinal!) but the drain placed lower down will reduce excess pressure more gradually than a ventricular shunt. Too little fluid can be just as bad as too much. My surgeon has also said that I might not need this at all, depending on what he sees inside, but we're preparing for that with pre-approval from the insurance company for a four-day stay in the hospital.

There is a remote possibility that I might develop hydrocephalus (too much fluid in the brain because it's producing more than it needs) but we won't know that until several months after surgery. In a case like that, a permanent shunt that goes into the ventricles and drains out in the abdomen would have to be implanted - this is what they do for infants born with the condition. It's not terribly likely, because this seems to be more of a mechanical issue caused by the hole, but neurosurgeons always have to tell you the worst possible outcome.

The headaches have gotten bad enough and constant enough that I'm taking the hydrocodone - it is slightly better than just tylenol - at least twice a day. If I get the lumbar drain, I will have a much worse headache for a week or so after surgery, but if I don't, it'll be mostly incision pain.

And then I'll be able to bend over again, and stand for a while, and get out into my garden, which is much more fun than the sofa!

Lunacie
04-03-13, 11:07 AM
Ack, I didn't realize the headaches were so bad that you need hydrocodone
daily. (((hugs)))

I'm still keeping a good thought that it will all get straightened out this
time and that you'll have a full recovery!

Amtram
04-03-13, 11:17 AM
I'm pretty certain that this will do it. Yeah, the pain is close to migraine level, but a different kind. I'm not sensitive to light, I'm a little startled by sound, but I think that's more of a brain issue than a part of the headache. What distinguishes this pain is that it's definitely made worse by movement, and I'm guessing that would be because of the depletion of fluid in my skull. I need to alternate between vertical and horizontal, because too much of one or the other is awful, and I need to do it veeeerrrrryyyy slowly.

Once the hole is patched up and my brain is once again protected by a cushion of liquid, and it stops collecting in my neck, things should start getting good again.

Lunacie
04-03-13, 11:25 AM
That reminds me of when I had a compressed disk in my lower back. Any
position, standing, sitting or lying, became uncomfortable and I needed to
move - and I had to move vveeerrryyyy slowly or my muscles would spasm.

I didn't have any hydrocodone. I was miserable, and I'm sure I made life
miserable for my family as well. I remember if needed to go any place, my
hubby would put a mattress in the back of my little Ford stationwagon and
I would lie down to travel.

So here's to this surgery making your life less miserable!

salleh
04-03-13, 12:49 PM
Hey girl.....I lost track of this thread for a while, and am so glad I found it again .....I have been reading and catching up on your progress....your courage is awesum ....and I wish your progress could be smooth and accelerating at a constant rate,.....but it seems that you are making huge progress, this fluid problem is causing you fresh problems ....

....but I am glad to hear your doctors sound as if whese things can be corrected ......and doncha just love the detached way that doctors have discussing stuff that is giving you massive headaches, and lesser occurances of the same problems you had to begin with ?

.....I had headaches every single day from when I was 19 til I hit 39, and they went away....sometimes sinus tabs or aspirin w/ caffeine could make them go away, some days nothing worked .....but since I hit 39, every single headache I have had goes away politely once I take 2 excederine .....so I empathize with your headaches .....I am thankful that mine go away now, as I have absolutely no tolerancce for headaches anymore ....


....I hope this part goes through ...I was interupted by a phone call from Janet, whois in NC for her aunts 98th birthday .....and there was much talk of kittens and puppies and the doings of the Barney here ....


.....and you know, the cheezfrends have a friend who had to have all her spinal fluid replaced, entailing a long hospital stay in a bubble, before and after the procedure, and her life hung in the balance for months....and she has been through trials, not like yours, but similar in that months were taken with recovery....and set-backs and then recovery .....she has pulled completely through .....it was not an easy thing to go through .....but she made it ...

....I am certain that this will turn out fine for you .....and think of it this way, you are nearer the end than the beginning....I know it's very hard for you, ....an ADDer is not good at patience....( slight understatement !) but you will get there .....

....You are in my thoughts every day .....srsly.....and I send many good energy thoughts at you all the time ....

ginniebean
04-03-13, 01:03 PM
Amtram, I hope this surgery is the last one you'll need. You are so brave and I can't imagine how hard this if for you. I'll be keeping you in my thoughts and wishing you a very speedy recovery.

Emtram
04-05-13, 11:14 AM
This mornings surgery went as expected with no surprises. She's in recovery, heading to ICU later today.

Dizfriz
04-05-13, 11:23 AM
This mornings surgery went as expected with no surprises. She's in recovery, heading to ICU later today.
Thank you for the update. We care.

Dizfriz

Abi
04-05-13, 11:49 AM
Yes, we care.

Tyler Durden
04-05-13, 11:51 AM
Get well soon Amtram, we have much dueling to do!

Lunacie
04-05-13, 01:44 PM
This mornings surgery went as expected with no surprises. She's in recovery, heading to ICU later today.

Thanks, good to know. And since she's out of surgery, the healing energy will be flowing NOW!

Lunacie
04-09-13, 09:38 AM
Get well soon Amtram, we have much dueling to do!

I'd much rather see a good discussion than a "duel" or a battle between two posters. :(

Sending more good thoughts and Reiki energies for healing to my friend Amtram. :)

LynneC
04-09-13, 10:23 AM
Amtram, somehow I missed this. :(

Sending positive thoughts your way for a speedy recovery and like many others, looking forward to your return.

Emtram
04-10-13, 09:45 PM
Amtram was released from the hospital today and is now at home.

She is in considerable pain except when lying down, so it's likely to be a few days before she resumes her normal forum activity.

It's very nice to have her back home!

Abi
04-10-13, 09:46 PM
Thanks.

Send her our love.

Lunacie
04-11-13, 08:19 AM
Thanks.

Send her our love.

Ditto ^

I will include pain relief in the Reiki energies I'm sending as well as healing.

Dizfriz
04-11-13, 08:34 AM
Ahhhhh! Tension ebbs. Thanks for the update.

Dizfriz

midnightstar
04-13-13, 03:02 PM
Love and gentle hugs to our Amtram and I hope she's back with us soon :grouphug:

Amtram
04-13-13, 09:32 PM
I don't have a lot of energy, and while my pain is considerably better, it's still there. I've been composing this bit by bit over the last couple of days so I could share it with y'all:

The Hospital

I got lucky; the first patient of the day cancelled, so I got in before I really had a chance to think about how hungry I was or how much I wished I had gotten a cup of coffee. All the preadmission questionnaires and consults with the assisting physicians and getting IV hookups took about an hour, but it wasnít long before I was being wheeled into the OR and getting an armful of Versed, which would make me forget everything that happened after they attached the safety straps that would allow them to turn me face down.

Recovery

I didnít stay long in recovery, but I could tell right from the start that this thing was going to hurt like anything. They had drained pretty close to a pint of fluid from under my scalp and the back of my neck. In order to press the scalp against my skull, prevent further fluid accumulation, and hold the patch in tight to the bone, they had packed a good couple of inches of gauze rolls against the incision/drained area and then wrapped me in a massively tight turban of more gauze and tape. As soon as my surgeon had seen me, explained how they had ended up doing the procedure, and what I was in for in the ICU, I was rolled up there.

ICU

The original plan was to drain 10cc per hour of cerebrospinal fluid through the lumbar drain that had been inserted into my spine. My surgeon was on call, and supervised the first drain. After 3ccs, it felt like a few dozen ice picks had been plunged into my skull all at once. So, new plan of action was to stick with 5ccs per hour, and to drain as slowly as possible. My first two ICU nurses were kind, caring, gentle people who treated me very well. . .day 2 in ICU was pretty unbearable.

Keep in mind here that Iím on a heavy duty opiate for pain, and it kind of sort of takes a little of the edge off. Keep in mind that after a lumbar drain, my pain is so huge that it no longer has an edge. Daytime ICU nursing staff really didnít consider this much of an issue. In fact, the common procedure was for the alarms and call bells to go unanswered while the nurses talked about the houses they were buying, how many of each kind of baby they wanted, and food.

My IV alarm went off multiple times, and I always pressed the call button, because usually all it needed was to be reset. If I pressed that call button and saw a nurse in less than a half hour, it was a miracle. In fact, I could press that button and see her looking into my room, and she would either continue eating, or walk around to the other side of the nursesí station. So just for ha-has, I didnít press the call button Ė until my IV alarm had beeped 400 times and I was getting tired of listening to it. They would also start my lumbar drain and then leave Ė and the idea of having more than 5ccs taken out while they disappeared for a half hour or so was pretty frightening to me.

Therefore, it was no surprise that this nurse decided on my second full day in ICU that it was about time I sat in a chair. Immediately after my lumbar drip was done and my head was exploding. Adding insult to injury, I still had a foley in, and she hooked the bag right on my pulse ox wire so my left hand was trapped. I started yelling that I was going to pass out, because, of course, they left me alone in the room like this, and they came in and saw me white as a sheet and drenched in sweat so bad that the dressing holding the lumbar drain came loose and decided maybe it wasnít quite such a good idea to make me sit up after all. The fact that for a half hour or so after that my pulse kept dipping down into the low 40s and they had to call in my surgeon kind of made it clear this wasnít something to try again.

The trip down to get a CAT scan was a pretty unpleasant adventure, as well. Hey, guys, thatís a conscious, living human being on that bed whoís just been through major surgery. Do not ride my bed down the ramps and swing me 90 degrees to the left just before we hit the wall, and then whip me around 90 degrees to the right to go through the next door. I am really not here for an amusement park experience. And maybe you could talk to me instead of carrying on a personal conversation between each other, you know, as if youíre concerned about my health and well-being.

The other unpleasant thing was a matter of dignity. This surgery made it so that even the slightest change in orientation from horizontal was excruciating. The pain from the incision and the packing in my neck hurt the back of my head, and the decreased fluid cushion around my brain gave me the stabbing headache in the front. However, at some point, they need to take the catheter out and you have to use a bedpan. My one good ICU nurse was joined by another good one on my last day, and both of them understood that going in a bedpan requires more cleanup than using a toilet Ė and both of them gently helped me turn over and lower the head of the bed and take care of that, because I couldnít do it myself. One other nurse didnít clean up my back and thighs, but at least she changed the pad. The others from the infamous day shift left me minimally wiped, and lying on a urine-soaked pad, which eventually soaked up into my gown, as well.

Upstairs to the regular rooms

This really is a different experience. It also helped that some of the nurses, food service, and cleaning staff remembered me from last time Ė they treated me wonderfully then, they treated me wonderfully this time. I was there Monday and Tuesday and part of Wednesday, and I didnít have to worry about my pain being ignored, or not being able to get help to get to the bathroom on time, or my doctor not being called when his directions were needed.

The procedure

So, the surgical cement that had been used to replace the bone that had been removed in my original surgery was fine, but my own bone simply didnít knit with it in one specific spot. I had been experiencing a pretty marvelous recovery, but then all of a sudden, my scalp started to fill up with more fluid, instead of continuing to flatten out as it had. Then the headaches started, in my forehead and slightly upwards, perfectly symmetrical, and with a distinct margin between pain and no pain. I could have drawn these headaches on my head with a sharpie.

The MRIs showed exactly where the fluid was leaking and where it was accumulating. This meant opening up an incision as close as safely possible to the hole, draining out the fluid that had escaped into my scalp and neck, sealing the hole with the same surgical cement, then using a combination of pressure dressings on the outside and draining cerebrospinal fluid from the inside to keep the new patch securely in place while it cured.

After, the headaches were the same as before, only much, much more intense. My surgeon says that these symmetrical headaches that start around eyebrow level and move upwards are pretty typical of low pressure headaches, and there are investigations going on to see if thereís a connection between ďweather headaches,Ē which have most of the same qualities, and an actual drop in CSF pressure.

Once I got home, I discovered quite by accident that the horrible pain (yes, it was still horrible. Really, really horrible) that hit the moment I started to get vertical, and which became worse the longer I stayed upright, could be mitigated by holding my hands over my head. I will try this trick for other headaches, you can be sure. The only thing that makes the headaches bearable is being horizontal. However, the pain medications are much more effective today than they were even yesterday. Staying horizontal as much as possible is essential to my recovery so that pressure inside my skull doesnít fluctuate more than necessary.

This is where I am right now. Iím not ready to be active on much more besides facebook, but I wanted to pass on the updates.

Abi
04-13-13, 09:39 PM
:grouphug:

ginniebean
04-13-13, 09:57 PM
Amtram,

That sounds absolutely hellish! Get well soon. Stay put don't move any more than you have to.

Lunacie
04-13-13, 10:00 PM
Gracious, doesn't sound like you're quite ready for jokes about "plastic
potato head" eh? Too bad there couldn't have been at least one good nurse
per shift.

It's very interesting to me that pressure headaches feel the same whether
the pressure is inside or outside the skull. Maybe this research will be of
help for my granddaughter who has inherited migraines from my side of the
family. Probably won't be much coming of it in time to help me at my age.

So good to hear from you. I continue to send you Reiki healing energies. :)

Amtram
04-14-13, 02:19 PM
A few more snippets to share. . .

The weird stuff

So, as I remember, Iím going to try to pass on some information about my experiences. Some things are unique to me, but some are common in brain injury that includes loss of cerebrospinal fluid.

Day one, my dreams were frenetic and without plot or direction. If youíve ever seen a movie or TV show in which a character is being filled with information from a computer, and itís just screen after screen of images and characters in rapid succession, that was what I was dreaming. None of it made sense, and there were more images of white screens full of alphanumeric text than anything else. I felt emotionally disturbed by these dreams, even though there was nothing inherently frightening about them. There has been a slow transition between dreams that consist solely of flashing images to normal dreams that are momentarily interspersed with these images.

This could be from the physical trauma of surgery, loss of CSF, or a side effect of the medications. It could also derive in part from the fact that I was being awakened at least once an hour, so it made me remember the dreams more!

Sound and light bothered me, just as they would if I were having a migraine headache. Draining the fluid cushion added another dimension Ė all the sounds around me seemed to be coming through a drum with a clear plastic head. (Drummers, you know what Iím talking about Ė itís a very specific type of reverberation.) The lower the pitch, the more reverberation, and the more painful it was to hear. My surgeon and his PA confirmed that this was related to fluid levels, because it changed how much my eardrums vibrated.

I often felt as if my head and my body were somewhat separated. After the nausea dissipated, I felt perfectly normal from the neck down, restless and ready to get up and move around. When I did, though, it felt almost as if my head were moving through thicker air than the rest of me.

Thatís all that comes to mind right now, but Iíll add more as I remember it.

Lunacie
04-14-13, 02:33 PM
Hm, interesting. I'm more used to the other side of that, where there's
too much fluid - behind my ears - so it's like playing a drum with one
hand while the other hand is resting on the drum head, muffling the
sound. Especially the sound of my own voice speaking.

I thought that was just a movie/tv effect, I didn't know anyone actually
had dreams like that, alphanumeric. I have discalculia, so that would be
a form of nightmare for me.

Amtram
04-19-13, 09:20 PM
According to the surgeon, I will continue to drain cerebrospinal fluid slowly through the puncture for a little while longer. Before they had lumbar drains, what they would do is perform one or two spinal taps a day (that sounds truly horrible - even a slow drip drain was incredibly painful) and the punctures from those were supposed to continue the drain after the actual taps were discontinued.

So today, we have a very low-pressure day, lots and lots of wind, and I have spent about an hour and a half grand total upright, and I swear I must be draining fluid still. Going to lie back down again now, in fact.

Symmetrical headache with an edge. Low fluid pressure in the brain. The incision area, on the other hand, is healing up flawlessly.

Amtram
04-27-13, 05:12 PM
I was thinking about this today as I was reminding myself that I really, truly do have a valid reason for being behind on everything and being tired and it's not because I'm lazy but because I had surgery three weeks ago. . .

A lifetime of being told that there's nothing wrong with you because nobody can see what's wrong with you does this awful thing to your thinking - you look in the mirror and all you can see is a shaved head, and your thinking is better, and there's nothing wrong with your body, and you feel guilty because laundry hasn't been folded, and someone else is doing the grocery shopping and cooking, and you can't even drive around the corner to pick up your prescriptions. . .

Remind yourselves that just because other people can't see anything wrong with you, they're not in a position to actually judge whether or not something is wrong with you. You don't need to live up to their standards or justify yourself to them. I had two brain surgeries in 6 months. If I need to rest, it doesn't matter if I look fine. So there.

Lunacie
04-27-13, 06:17 PM
Abso-freaking-lutely true!

Amtram
04-30-13, 11:14 AM
I am trying not to be paranoid. Last night I noticed a pocket of fluid under my scalp above the new incision. It's small. I'm trying to convince myself that it's there because all the other stuff that's healing has pushed it into that space. It's small, but the last one started off small, too. The absolute last thing in the world I want is a re-do of this procedure. I'd rather give birth again. . .

ginniebean
04-30-13, 11:17 AM
Keeping my fingers crossed. I'm so sorry you're frightened. (((((hugs)))))

midnightstar
04-30-13, 11:34 AM
I am trying not to be paranoid. Last night I noticed a pocket of fluid under my scalp above the new incision. It's small. I'm trying to convince myself that it's there because all the other stuff that's healing has pushed it into that space. It's small, but the last one started off small, too. The absolute last thing in the world I want is a re-do of this procedure. I'd rather give birth again. . .

I'm sorry you're so afraid, I hope everything sorts itself out really soon for you Amtram :grouphug:

Flory
04-30-13, 01:11 PM
Ahh Amtram do you have an aftercare package from tie surgery I.e clinicians you can speak to about your concerns? X

Amtram
04-30-13, 01:58 PM
My doctor is excellent, and his staff responds quickly. If I notice a change that concerns me, I can call and he'll take me right in. Part of it is probably because as sensation returns I noticed it - it might have been there all along. I just need to watch it to see if it gets bigger. As long as it stays the same, I can chill about it. Kind of.

Lunacie
04-30-13, 03:29 PM
So scary. (((Amtram)))

I think better to be paranoid and be wrong than to be lacksadaisical and
miss something. But paranoid is no fun at all - I think you should call the
doctor's office and ask about it. Set your mind at rest one way or the other.

Amtram
04-30-13, 04:45 PM
I laid back for a couple of hours on an icepack, and it seems a bit less swollen. . .maybe it was something besides cerebrospinal fluid? I'm just happy that it went down a bit.

LynneC
04-30-13, 08:33 PM
I laid back for a couple of hours on an icepack, and it seems a bit less swollen. . .maybe it was something besides cerebrospinal fluid? I'm just happy that it went down a bit.
If it's still concerning you tomorrow, call the office. If the doc/staff tells you it's nothing to be worried about your mind will be eased.

And it seems propable that if the swelling went down with an ice pack, it's not so likely that it's cs fluid, right?

Sorry you are having to deal with this... :(

Amtram
04-30-13, 09:04 PM
Yes, that was my thought. Once I took off the ice pack and things were flatter, I was much more at ease.

And also today, I drove, and didn't get overwhelmed with the visual goings-on, which is great progress, and when I was walking, I wasn't losing my balance, which is also great. I just worry because I really, really, really never want to have my head opened up ever again!

Rebelyell
04-30-13, 10:21 PM
Is all this stemming because of the tumor ya had operated on or is this something else?sorry to make you rehash anything its hard for me to keep up.yes or no would even be fine.hope you start feeling better and get some lady luck on your side for2013

peripatetic
05-01-13, 12:08 AM
glad to hear you're feeling better. x