Neurofibromatosis Type 2: Benign Tumors of the Nervous System

[@greggj1022]

Dr. Asthagiri at UVA is the most amazing, personal, reliable, comforting, honest and the most talented neurosurgeon. When he preforms surgery on my son I'm confident it will be successful.

[@matthewwilliams1212]

Getting my MRI tomorrow, I was fortunate enough to just have fibromas and ADHD for the 1st 30years of my life, over the past year I have developed large plexiforms, severe pain, hearing and vision loss, and an unsteady gait... Trying to get into a specialist without great insurance was near impossible. Now I finally qualify for Medicaid and can start seeing a neurologist again.

[@sriramjanagani9861]

Iam also this problem same simtums

[@janetarmor8957]

We need a chat room for people with nf1 and nf2 also nf3

[@oliviahunter5587]

Yes i agree I hall all 3

[@jasminarasid4478]

I agree

[@nameless_753]

There is a group of facebook for us

[@oliviahunter5587]

I'm in the groups

[@matthewwilliams1212]

NF3? Is that Schwannomatosis?

[@kathleencole80]

Can these tumors be starved out via dietary restrictions or limitations?

[@michelleyanagisawa7283]

What Hospital is thisnxDr. practicing at?

[@oliviahunter5587]

I live with nf2 it's very hard to deal with very painful everyday I have a huge plexiform on my face it's def not easy to live with

[@matthewwilliams1212]

The pain is something I think always gets overlooked, mine has recently become crippling since since last fall, it's tough finding a doctor in my area that is willing to provide me with anything that will make it manageable, I'm in bed most of the day now.

[@VivekSingh-ud2pp]

Yes

[@Daviid_Martinez]

@@matthewwilliams1212 same

[@shrutisharma48]

We all are bearing a pain that no one can understand..it's very hard to live life with NF2. I lost my hearing and speaking ability😭 how will I live the rest of my life without hearing music. I feel doomed!

[@frankied.roosevelt6232]

Can anyone tell me how to get in touch with practitioners who investigate this issue? I have a non gene specific ehlers danlos syndrome that lines up with classical criteria. We also have a family history of brain stem glioma and acromegaly. I have a lot of the other autonomic neuropathy problems from confirmed small fiber polyneuropathy and idiopathic anaphylaxis requiring iv medication intervention. I also have tarsal coalition and so do both of my parents and siblings, with mine requiring reconstructive surgery several times. I have a lot of unexplained masses on my arms, back, and butt, and I keep getting told that its not EDS related, but the same doctors only recognize type 1 NF and that I dont have that because of their small understanding as to the other types. So just trying to figure things out, I guess, since my lesions/masses look like nf2. I'm also having progressive ocular issues asymmetrical with one eye and night blindness in addition to the normal pupil dilation issues of dysautonomia

[@DeMiTriDreams]

I wouldn't really consider the long term effects of this completely benign.

[@TrXsh_QuEeN420]

My mom has it? Should I get tested?

[@uvahealth]

Thanks for your question. Neurofibromatosis Type 2 (NF2) is a genetic condition. Hearing loss and balance problems could be signs of NF2. More information can be found at uvahealth.com/services/neurocutaneous/neurofibromatosis-type-2. We also suggest you consult your doctor. If you'd like to make an appointment with UVA, call 434.924.0000, or schedule online at forms.uvahealth.com/appointment/.

[@priyankasivakumar645]

I am going through it with severe pain. And balence problem... How can i cure it?

[@uvahealth]

Thank you for your comment. We are sorry to hear you are in pain. Unfortunately we can't offer medical consultation online. We suggest you consult with your doctor first. If you'd like to make an appointment with UVA, please call 434.924.0000, or schedule online at forms.uvahealth.com/appointment/. More information on NF2 can be found at uvahealth.com/services/neurocutaneous/neurofibromatosis-type-2.

[@aliasgharasghar6669]

I have N2NEUROFIBREMOTOSI plus I have brain atrophy I am unable to balance myself PL advise

[@uvahealth]

Thank you for contacting us. Although we can't advise you online, we strongly suggest you contact your doctor. If you'd like to schedule an appointment with UVA, call 434.924.0000 or schedule online at forms.uvahealth.com/appointment/.

[@sarbdeol2497]

I have nf 1

[@saboblutdamon858]

I got nf2 and I'm starting to get ringing in my ears, visions gotten blurry before and now my back and ribs are hurting, got three large tumors under my left armpit that are deeper inside there,

[@Rosa-jv6we]

You’re scarring me .... I also have it.if you don’t mind how young are you so I can be aware

[@lifeinthefastlane395]

I have exact symptoms. Been having ringing for 2 years,tumors under my arms and some on the rest of my body, ribs and back hurt and vision and hearing is getting worse. I was just diagnosed 2 days ago. I'm 26.

[@saboblutdamon858]

@@Rosa-jv6we I'm 20 but they first showed up when I was 15

[@Daviid_Martinez]

@@saboblutdamon858 I was 12 and now I’m 19…the worst part is…is that the ringing doesn’t stop and the pain is terrible

[@Daviid_Martinez]

@@lifeinthefastlane395 how are you holding up cause I’m 7 years strong with nf2

[@najibamiri1028]

I have nf 1 and i have diabetes

[@RuxshonaNurmatova-i1v]

Menda ham bor iltimos bu kasaligdan qutulaylig bizning tanamiz ham ozgalarnikiga oxshab chiriyli bolsin shu kasaligdan aziyat chekayotgan men va boshqa bemorlarimiz uchun izlanip davosini topinglar doctorlar iltimos davosini topinglar 😢😢😢😢😢😢😢😢😢😢😢😢😢😢😢😢😢😢😢😢😢😢😢😢😢😢😢😢😢😢

[@savanahk8437]

i am 15 years old and i have both type 1 and 2😔

[@shrutisharma48]

Heyyy 😭💔 don't be disheartened. Its, life..sweety. How are you doing now?

[@ruhiulfat2000]

​@@shrutisharma48 😢😢

[@armiesep8710]

Is this much like cancer?

[@mblabezza]

It basically mimics cancer except it doesn’t spread. But can come back as cancer and grows on nerves typically