View Full Version : Neurofibromatosis 1 and chronic pain

11-03-10, 11:41 AM
Some patients with Neurofibromatosis 1 have learning disabilities and ADHD. My niece has both. She is 25 and has two children under five to take care of.

Does anyone here have this NF1? My niece has just been dxd with it. She went to a neurologist and was told there is no treatment for her because her tumors are on her nerves. She is in chronic pain.

The neurologist she went to did not seem to know much about NF1 nor pain management. He told her to deal with it without meds. and try physical therapy. She already did that and the pain was excruciating.

She was told by the therapist PT would be dangerous because of the tumors on her spinal nerves.

Does anyone have chronic pain associated with spinal nerves?
How are you being treated for pain management?

11-04-10, 12:53 PM
My niece just got back from her PCP who agreed with my niece that the neurologist did not understand NF1. The neurologist, without even looking at her MRI, wanted her to go home and "deal with it." Pfffft!.

I wonder how many other patients he has sent home to "deal with it" when there is treatment available he just doesn't know about.

She will be sent to a different neurologist for a second opinion about surgery.

There are surgeries that are available should she need it. The Mayo Clinic has does surgeries using liposuction to remove tumors without damaging the nerves.

We are hoping she wont need surgery but it is good to know that there really is treatment for her. :)

For now she will be put in pain management through her PCP using various medications.

09-14-12, 01:16 PM
I am suffering chronic pain and have been for sometime and I keep getting the run around from my doctor(s) saying it's muscular skeletal and to take ibprophen and tylenol and it doesn't even touch it. There are days I can hardly walk it's so bad. Every doctor I have been to has been clueless about NF or the symptoms associated with it other than the cafe au lait spots. I'm so frustrated I could scream sometimes. I have only been to one doctor that admitted they didn't know much about it and said give me a minute and i will do some quick research about it. I wish more doctors were like that one. Sadly i'm unable to see that particular doctor anymore and at the time i did i wasn't going thru the pain like I am now.