Neurofibromatosis (NF2) life expectancy?

Guest over a year ago

Hello,

I’m going through pretty rough times for the last two months, and from one neurologist and test & scans to another, all in hope to get any alternative diagnosis than type II neurofibromatosis. NF2 is a genetic disorder that runs in families and either my mom or dad should have it – but they don’t, and I, it seems, do. I’m 18 years old female and all my problems started after I had a seizure, out of the blue. MRT and CT scans found 6 small tumors on my brain and I was diagnosed with NF2. The neurologist that diagnosed me was pretty OK as far as answering all my questions, except one – how will neurofibromatosis affect my life expectancy. All the info I read is very depressing and it seems that all I have to look forward in my life are neuro-surgeries, but even with that prospect, does anyone know what is an average life expectancy for NF2 patients?

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ybanks522310520 over a year ago

Hello Guest. From what I've read, it seems that as long as the tumors can be removed, you will have a chance to live a while. If you only have 6 small tumors, they can be removed but with a possibility of becoming deaf. There is a risk of facial nerve damage though if the surgeon is good, this will be minimized. There is always the risk of becoming disabled from the tumors being removed, with possible balance problems, visual issues, and weakness. You could be wheelchair bound as the result. If a patient has many tumors, their life expectancy is shorten to living into just their 20s or 30s. Since you only have six, you may be able to live longer. I hope you have minimal problems when you have your surgeries and that you can live a productive life.

Does anyone else have a neurofibromatosis diagnosis?

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Guest over a year ago

Fadi from texas: i am 51 y o male w/ nf2, RELAX! I can't answer your question but being mentally sharp is very important. I had several surgeries. at 27 years old they took a fist size tumor from my right part of the brain which left me deaf in the right ear, then 14 years ago they found another in the left side but small where the surgery 'gamma knife' was used. it is gamma rays that shoot the tumor and stops growth (then I got the labeled nf2)...I became almost deaf in the left ear w/ only low tones (no high tones, no hearing aid will work), then 6 months later they took a large tumor from the right bicept/tricept area... all these surgeries were in mayo clinic rochester Minnesota.. I have been working out for the last seven years and having mri's of the brain frequently. my advice is: be strong, see a psychiatrist as often as you can. I am on bunch of meds for depression/bipolarism and many more... take it one day at a time.
all nf2 results are different, we can not compare it (size of tumor..) do not worry about life expectancy...again I am 51... you will do better than me since they caught it early in your age.

I hope this help! be good, smile

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reba over a year ago

Hello, I'm faced with a similar situation. In January I underwent brainsurgery for my vestibular shwannoma/ acustic neuroma. I lost my balance nerve and my auditory nerve was damaged to the point that I lost my hearing. Furthermore, I have seizures since the last 9 month. I know the situation seems grimm, but with proper treatment the live expectancy is up to 69 years as average). With the hope that treatment will improve, hopefully life expectancy will go up. Good luck to you in your journey

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Guest over a year ago

hi, in 14 and i was born with nurofibromatosis type 2. every 6 months i get MRIs and i have 2 tumors on my brain that if removed woukd cause me yo go deaf. i would love to get in contact and talk to you more.

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Guest over a year ago

I am 56 and have nf2. I had a tumor removed from my arm when I was 4 and have had two brain surgeries, I currentl have 24 brain tumors and a few smallerer one is my spine, .

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Guest over a year ago

Hi , I have 2 tumors on my brain , my lungs and chest are full of tumors , so much that they can't even count how much , my legs , arms and neck are full. My hole spinal cord is full of tumors , have them behind my eyes as well and have over 40 tumers in my stomach. Have extreme pain every day , all the neuro surgens I have seen don't want to operate it's to dangers , They say I will loose my hearing , will go blind and be wheelchair bound in time , but they can't say when and what's my life expectancy , they don't really know this illness.

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Guest over a year ago

Hi I'm 31 I found when I was 21 I've had two surgies two remove tumors from my spine. I've had 55 radiation treaments. I also have a tumor in my cranium that is to big to be removed by surgery. I went deaf along time ago. I'm also blind in my left eye since birth. My life is full of pain, but if you want my advice live life it sounds cliche but so true.

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Guest over a year ago

I was born with nf 2 i have 2 tumbers on my brain i have 2 remove on myskill i am 54

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Guest over a year ago

I was diagnosed with NF2 at the age of 26. And now I'm 43.and now have 6 tumors 1 the size of a egg behind my left eye attach it self to my optic nerve.the other tumor is grown next to my temple. And one in my sinus cavity the rest on my face.doctor do not want to touch it to risky what should I do any help nyc

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Guest over a year ago

Hi my brother inlaw is 35 yrs old he has nf1 and nf2 he has thousands of tumors he is in very good health and suffers very little considering my daughter also has both she is 12

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Guest over a year ago

hi I have nf2 very pain full had it from 9 years old now at 57 have it on my lungs and brain spinal cord is full of tumors and in pain ever day some time I just want to give up had operate in 1999 had some remove on my spin have no filling on right leg I toll my mom that I will not give up have a good day

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Guest over a year ago

Hey guys, I'm 24 years old male. Have one small tumor in my left ear and one 3 inch sized one in my back between my ribs. The back one I definitely need out, affects my everyday with pain and discomfort. My father is 56 and has had about 5 surgeries over his lifetime and is still in wonderful health(he has nf2 as well).

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Guest over a year ago

My brother was diagnosed with NF2 at the age of 15 he is now 47 and in great deal of pain. We are told to expect he's life to end soon (within a couple of months.) I believe each case is different and I pray for you all. God Bless

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Jones over a year ago

My brother was diagnosed with NF2 at the age of 15 he is now 47. He was released from the hospital 04-09-2017. We were told to be prepared for more changes in the upcoming months. He is in a great deal of pain. I believe cases vary. God Bless and we pray and understand.......

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