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.
@@hotheadedbab my man I was 12 when I got diagnosed with nf2….I’m now 19 and I’m in the worst shape of my life. I hope you don’t have to go threw what I’m going threw right now
@@Daviid_Martinez I was 13 when It developed. Now I am 20 and I have lost my hearing and speaking ability completely. Facial palsy, ulcers and what not! If it was not for my parents, I would have resorted to self harm because communication is essential to me..I was literally a person who loved to sing and hear music. I still remember music and some songs I hymn to myself in my mind💔 Don't know how I am gonna live the rest of my life..It's already my 4th tumor 😭 plus I won't be able to give birth to children in future..I cannot see them suffer like this! I was a happy child once, then NF2 came in my life like a devil. Tho I still have hope for better days!
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.
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.
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!
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 😢😢😢😢😢😢😢😢😢😢😢😢😢😢😢😢😢😢😢😢😢😢😢😢😢😢😢😢😢😢
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
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.
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/.
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/.
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,
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.
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.
I’m 14 with nf2, but let’s all hope that by the next 2-3 years they’ll find a cure. 🤞🤞🤞
how are you guys keeping ?
@@Theking-mz9bk how are you keeping no escape
@@medb8882 I’m honestly doing fine. I had a shunt replacement a few months ago, but other than that I’m alright
@@hotheadedbab my man I was 12 when I got diagnosed with nf2….I’m now 19 and I’m in the worst shape of my life. I hope you don’t have to go threw what I’m going threw right now
@@Daviid_Martinez I was 13 when It developed. Now I am 20 and I have lost my hearing and speaking ability completely. Facial palsy, ulcers and what not! If it was not for my parents, I would have resorted to self harm because communication is essential to me..I was literally a person who loved to sing and hear music. I still remember music and some songs I hymn to myself in my mind💔 Don't know how I am gonna live the rest of my life..It's already my 4th tumor 😭 plus I won't be able to give birth to children in future..I cannot see them suffer like this! I was a happy child once, then NF2 came in my life like a devil. Tho I still have hope for better days!
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.
Iam also this problem same simtums
We need a chat room for people with nf1 and nf2 also nf3
Yes i agree I hall all 3
I agree
There is a group of facebook for us
I'm in the groups
NF3? Is that Schwannomatosis?
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
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.
Yes
@@matthewwilliams1212 same
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!
What Hospital is thisnxDr. practicing at?
I wouldn't really consider the long term effects of this completely benign.
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 😢😢😢😢😢😢😢😢😢😢😢😢😢😢😢😢😢😢😢😢😢😢😢😢😢😢😢😢😢😢
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
i am 15 years old and i have both type 1 and 2😔
Heyyy 😭💔 don't be disheartened. Its, life..sweety.
How are you doing now?
@@shrutisharma48 😢😢
I am going through it with severe pain. And balence problem... How can i cure it?
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.
I have N2NEUROFIBREMOTOSI plus I have brain atrophy I am unable to balance myself PL advise
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/.
My mom has it? Should I get tested?
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/.
I have nf 1
I have nf 1 and i have diabetes
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,
You’re scarring me .... I also have it.if you don’t mind how young are you so I can be aware
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.
@@Rosa-jv6we I'm 20 but they first showed up when I was 15
@@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
@@lifeinthefastlane395 how are you holding up cause I’m 7 years strong with nf2
Is this much like cancer?
It basically mimics cancer except it doesn’t spread. But can come back as cancer and grows on nerves typically