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I heard life expectancy was age 65. My older sister has it and she is 62.
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My four year old son has been diagnosed with nf2. We are devastated. It all started at 10 months of age with 3rd nerve optic paralysis. I'm so afraid for his future
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Go to Memorial Sloan Kettering Cancer Center on the Upper East Side...they helped me out amazingly
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I have NF2 was diagnosed in 2014 had golf ball sized tumor in between frontal lobes and was removed that year. I've read that many NF2 patients tend to have other burden diseases, can be related to NF2 and some conditions not directly related. My age~ 48
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I'm sorry you are facing this with your child. I was diagnosed in my 40's , and your born with it , I was shocked. I have always had health issues tho before my diagnosis. I hope all goes well for you and your family..
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Take heart I'm 68 years old and still going strong although I've had tumours removed - one on my brain and others on my body. I'm deaf, have facial palsy , suffer from poor eyesight and am unsteady due to weakness down one side, I also have fits.. But guess what I'm still here and I intend to stay that way for years to come.!
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I️ have neurofibromtosis and I️ went to the ER a couple weeks ago and they found a softball size tumor growing inside my chest cavity causing pain and discomfort to my rib and I️ have been experiencing dizziness a lot does this mean I️ may have to have surgery can anyone tell me please
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Really? I meant no disrespect but how do 24 brain tumors looks like? Me myself had 2 brain tumors and it is very huge
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Hi all, I am also a NF2 patient which I had the first onset at aged 31. I had acoustic neuroma on the left ear and also two big spinal cord tumour being removed in 2005. Plus many small tumours in the spinal cords as well. I am chinese. So since I have discovered my illness, I am seeking alternative treatment. I have been using ACUPUNCTURE since 6 years ago. Thanks God, tumours stay small, nothing happens (touchwood) and during this 12 years since last my surgeries in 2005, I eat healthy, stay positive, and I think it's this acupuncture which has helped me a lot. I can't say it works for everyone. But the chinese medicine theory is a bit different from the western. So I trust my chinese doctor. Maybe you can try. We are not going to get rid of the NF2, but to live with NF2. 12 years on, the tumours on the spinal cord and left ear are still there, but not growing, isn't it what I wish for?
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Hello and greetings. I have NF2 and I am 55 years young. I have had many, many operations for the past 30 years and I can imagine things are difficult for you at this time but you got to be strong and courageous. Due to todays advancements in medical treatments and knowledge we have a much better chance of fighting this illness. My first operation 30 years ago took about over 12 hours and kept me in the hospital for a many weeks, because they didn't know as much about this illness. Now in my operation I had 2 years ago I was in and out of the hospital within 24 hours and the next day I went to a baseball game. We have a rare illness but they are learning more about it and how and when to treat it. We just have to remember to be strong and courageous and follow up with our doctors. Good luck and for your info I still feel like I am in my 30's
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I have nf2. I have had several tumors removed. First one was in 1999 in my cervical part of spine. Since have had brain....back....shoulder. .arm...bottom of foot...surgeries. I have severe balance and walking problems. I am 65 now and refuse to let nf2 take me in.
Hang in there my fellow nf2 friends.
Bless you all
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Hi everyone with nf. I have both nf1 and nf2 I am currently 34 yrs old. Have had both since they were discovered at age 7. My mother had both as well. I have had around 20 plus surgery's. I have 4 brain tumors they were all operated on but were unable to be fully removed. My brain tumors have been reduced in size and I have gone through gamma knife also and since then they have not grown any bigger. I also had a spinal tumor removed from my neck completely at age 8. Unfortunately about 5 year's ago I found out I one growing out of my spine. I have tumors all over my body but I have several different kinds of tumors. Some hurt when any pressure is put on them others don't really bother me. I have bad balance had acoustic neuromas removed that were attached to my hearing nerves had them taken out at age 28 because I was almost deaf anyway so now I have been deaf for 6 going on 7 years. My vision was affected from my brain surgery's but I'm stubborn and am not planning to give up anytime soon or ever. My mom died at 45 years old. Everyone with nf has varying life expectancy. I don't really go life expectancy I believe that anyone makes the choice about how strong and hard they plan to fight to continue living. It takes courage and strength both physical and mental to live with this disease. Believe in yourself love yourself and know that you are not alone in the battles you face go thru and overcome. Our disease makes us fighters, survivors. The fight will never be over so we just have to be ready for the next fight/challenge our sends our way. In case no one told you this our disease will never stop continuing to return. Surrounding yourself with those who love you and and believe in you should encourage you to keep living loving and fighting all challenges.

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I am nearing 60 with nf2.had gAmma knife 35 years ago...heading issues...some balance issues but live a great life
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