Neurofibromatosis Support Group
Neurofibromatosis is usually noncancerous. There are three types of this condition. Type 1 usually appears in childhood, while Types 2 and 3 appear in early adulthood. Type 1 can cause bone deformities, learning disabilities, and high blood pressure. Type 2 can cause hearing loss, vision loss, and difficulty with balance. Type 3 can cause chronic pain throughout the body....
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.
ask your doctor about it. if he gets nasty go to a different
doctor. best to you and good luck cora
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.
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....