Nuerofibromatosis Type2

Trippy

Trippy

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Well, thats what I have. Does anyone else also have this condition? 2.5 years ago is when I lost my hearing to this disease. I've undergone 2 brain surgeries and a spinal surgery since then to help remove some tumors and I start radiation treatment in a month or two.
 
rockin'robin said:
Would someone be so kind to explain more about this disease?
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Neurofibromatosis Type II (or "MISME Syndrome", for "Multiple Inherited Schwannomas, Meningiomas, and Ependymomas") is an inherited disease. The main manifestation of the disease is the development of symmetric, non-malignant brain tumours in the region of the cranial nerve VIII, which is the auditory-vestibular nerve that transmits sensory information from the inner ear to the brain. Most people with this condition also experience problems in their eyes. NF II is caused by mutations of the "Merlin" gene,[1] which, it seems, influences the form and movement of cells. The principal treatments consist of neurosurgical removal of the tumors and surgical treatment of the eye lesions. There is no therapy for the underlying disorder of cell function caused by the genetic mutation.


Neurofibromatosis type II - Wikipedia, the free encyclopedia
 
Trippy said:
How has he handled it. Is he deaf, blind from it? Hope its ok to ask
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He is not blind. Last I knew, he was having radiation treatment to shrink the acoustic neuroma. I don't know if it worked or what else will happen in future.
 
Thats good. I may lose vision in my right eye eventually as well. Bllindness is more common than deafness from this condition so i am thankful i lost my hearing over my vision.
 
Trippy said:
Thats good. I may lose vision in my right eye eventually as well. Bllindness is more common than deafness from this condition so i am thankful i lost my hearing over my vision.
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I am born deaf, but have lost most of my vision from an entirely unrelated syndrome.

Don't worry too much, as you can adjust to anything. I am still working on adjusting to white cane travel , etc, but I am adjusting. :wave:
 
You are very strong. I honestly dont know if i could handle being completely blind on top of being completely deaf. I know people always say its not to hard to addapt but i just dont know if i honestly could.
 
I have a friend with this. It is a struggle to remain optimistic. Good luck to you.
 
I have an inherited connective tissue disorder. Still trying to get a more specific diagnosis. My rheumy doctor says that I have to see the neurologist next. Is a neurologist the specialist that diagnosed the NF2? Was is discovered by CT or MRI?

Feel free to ignore these nosey questions if you'd rather not answer. I'm just curious because I have hearing loss and unilateral facial palsy.
 
sallylou said:
I have an inherited connective tissue disorder. Still trying to get a more specific diagnosis. My rheumy doctor says that I have to see the neurologist next. Is a neurologist the specialist that diagnosed the NF2? Was is discovered by CT or MRI?

Feel free to ignore these nosey questions if you'd rather not answer. I'm just curious because I have hearing loss and unilateral facial palsy.
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A neurologist would be able to tell you if you have NF2 or not after a MRI. i was noticing i was having problems hearing so i went to my doctor and asked after i got directed to my neurologist we discovered thats what i had. I have facial palsy in the right half of my face too from a brain surgery i had. i also have nerve damage on my left ribcage and underarm from a bedsore that didnt heal right after a 22hr long surgery.
 
My left side face is paralyzed from nerve damage also. There are more people with that than I thought!
 
Thanks for that info. Right now, I'm most concerned about bone loss in my hands. It's more likely that I have neuropathy or Chiari malformation than NF. I have subtle congenital craniofacial differences and bone issues that may be causing the facial nerve problem. I think that NF needs to be ruled out, though. So not looking forward to the neurologist visit! lol

. .
 
few my friends have tumoser is disease reason pretty sound difficult! that is disease sad!
 
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