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Neurofibromatosis type 2

Posted by @laura1228 in Brain & Nervous System, Aug 21, 2012

I am 35 years old, and have just been diagnosed with Neurofibromatosis type 2. I've had two prior surgeries from two different surgeons. One medical student "diagnosed" me with this about 2 years ago, but it didn't last because she was in med school in Atlanta. Today, I was diagnosed by a Dr I wanted to hug after all these years wondering if it was more than just simply having surgery to remove the schowannomas when they grew back on the nerve. I also wondered how long I would live if they kept cutting my nerve out since it is the main one that goes from your brain throughout your entire body. So far they have cut the nerve out in my left leg in hopes that it would stop the tumors from growing back.. It failed to work. They are back, and just up higher where the surgeon cut. Luckily they are slow growing however, so that has been a long hard enduring road to take, but at least even though there is pain, there's not a lossof my limbs.. just nerves. I used to go from ER to ER with my dad when I was 12 years old trying to find out why I was always in so much pain in my foot. I couldn't sleep, and finally with an MRI at the age of 18 I was told I had schwannomas and they would remove it. It was 8 CM in diameter in my calf. It looked like a calf muscle "sort of misshapen" I believe I wasn't diagnosed correctly because of my medical insurance, and because the lack of experience in such a rare desease. From my well respected family physician, to both surgeons... it's disheartening to realize I could have been diagnosed at the age of 12 or 18, but it took until I was 35, and moved out of the state of Oregon to get properly diagnosed. Now, I've been referred to the Mayo clinic for Neurofibromatosis type 2 in MN... which is quite the distance from Reno, NV.. and I may end up having to move to MN if this is the only place in the US I can get the proper help. I've never been there, and I can't find much info on them, but the one in Az is not too far, just the next state over, so maybe if that one has the same treatments it would be possible to go there instead, or in conjunction with whatever treatments I will be getting. From what I know, there is no cure for NF2, and I'm not exactly sure about what treatment options are available.. Is it bad? Is it Radiation treatments? What treatment should I expect? Am I the only one on the planet with this rare desease? Do we all live in MN then? I have to say it's been hours since the diagnosis, and I'm only realizing I have way more questions than answers, and I feel alone. Anyone else who has been through anything like this? Or anyone else with the desease.. I would appreciate some answers, of expectations on what in the world this is, and why it is me that this happened to. Will my children, or grandchildren have this same problem?

JSolesky likes this

Posted by Anonymous-3cd35129, Aug 22, 2012

Hi Laura,

This came through as a Google alert so I signed up to reply to you.

I recommend you check out the NF2 Crew. Go to and to the tab "join us". That will bring up a list of our groups and how to join them. We have a group on Facebook (which is the most active group), a message board, and an email list. You are definitely not alone in dealing with this disorder. The NF2 Crew is a great place to connect with others who are going through similar struggles. Hope to see you there!


Posted by @alexsimon, Aug 29, 2012

Hi Laura -
I also found some more info on MayoClinic:


I work for Mayo Clinic so i'm going to look into which of our Neurologists at all 3 campus's specialize in Neurofibromatosis.


Posted by @alexsimon, Sep 4, 2012

Hi Laura -
All four of our all 4 of the Neurosurgeons in Arizona see patients for neurofibromatosis. If you would like to request an appointment please click on the "request an appointment" button on the upper right hand corner of your screen.
Thank you,

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