Neurofibromatosis Support Group

not too sure. what did the doc say?
My son has white matter around the nerve sheaths of the cerebellum but they say that is just part of NF.
I wonder though because he has some balance issues.
Try to talk to the doc instead of going online, that only adds fuel to the fire.

Hi benzar this is cora sounds to me like you have m.s.
ask your doctor about it. if he gets nasty go to a different
doctor. best to you and good luck cora

When I had my brain MRI I received a copy of the report from my neurologist. She went over it with me, explained what things on it meant and then she gave me a copy.

I have tumors in my brain (2 of them) that she says are towards the back left side. This is where I get a lot of headache pain, but nothing as severe as the migraines I experience.

They are being monitored, but did not show any change in the 2 years they have been watched.

(I am due for having them checked but it is currently on hold)

Hopefully you have a marvelous doctor who will sit down with you and go over the results as mine did.

I have to agree with igloo, not that this is a bad site,because it is not, but getting advice on-line can only add fuel to the fire(your nerves, making you worry more) Talk to your neurologist and see what they say. I wish you the best of luck. I here if you'd like to chat.

My doctor does the same. Goes over all results and gives me a copy. It is important that you also keep you own medical file. I learned This after getting a result back where the radiologist stated he did not have a copy of past MRI reports.

They can see the films again but they like to compare notes with the other radiologists...not have to re-measure etc... I now bring my files with me. Just the paper report is enough.

I don't know how the the rest of the world operates but in RI there are two medical conglomerates (for lack of a better word) Lifespan which is super huge and covers most of RI medical. Try to stay in network or it will just be a hassle....

My 8yo son has parietal lobe hamartomas in the right hemisphere of his brain. He has gone from 1 tumor to multiple in a little over a year. He has also been diagnosed with simple partial and simple complex seizures that are due to his tumors. As the tumors grow there can be an increase in complications. Unfortunately bc NF tumors are neurological mostly they just monitor them. they wont do surgery unless they are life threatening. Hormones are a large part of the growing process and the reason my sons tumors are growing and multiplying. Pls understand that I can only tell you about my son and your case is may be different. I do know that since he has been on the seizure meds his headaches have stopped but irratic behavior has increased. I think it is good for you to inform yourself You need to understand your NF and be fully informed. Alot of drs dont take the time to talk to you and there are things they wont tell you(Ours dont always); like what the ultimate outcome could be and these are things that take a natural adjustment period. You should only do this though if you understand that... can doesnt mean will!