ANA Discussion Forum
General Category => NF2 => Topic started by: oh, now what on March 30, 2017, 09:21:52 pm
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Since surgery I am "possible NF." I am 65 yrs old with an AN on one side, so far, and a history of benign tumors, most upsetting are in my eye. Thoughts of losing hearing and sight are tough. I guess I'll wait until I get through an annual MRI in April to try to make a decision on hearing rehab. My sight now is good, but I want to do better in the hearing dept. The webinar today was helpful. Just a lot, I was assured previously because of my age I was not NF. Maybe mosaic? I guess we're all deficient in tumor supressor hormone (merlin?). I hope somebody figures out how to prevent and cure all kinds of problems with these buggers, and with cancers.
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What did the doc say? I couldn't imagine being deaf and blind. Have you spoken to someone who specializes in NF2??
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I haven't started looking for an NF specialist. Doctors said I wasn't NF beccause of my age. On my last ophthalmologist report I read ""possible NF." I called the office and was given to a tech who said the note was from another doctor. I'm still soaking this in, though not totally surprised after reading of other experiences and histories and the varieties of NF. Don't know how much anyone could tell me or predict. Thanks for reading my post.
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Even if it's mutated it would be hard to tell.
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I think it would be to your benefit to see an NF2 specialist. Unfortunately, there aren't that many of them, so it depends on where you live whether you have one nearby. I have heard of people being diagnosed with NF2 in their 60s, so age is not important here.
Where were your other benign tumors (other than your eye)?
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In '98 I had a (huge) ovarian tumor, initially thought to be stage 4 cancer but diagnosis was changed a couple months after surgery.
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Any suggestions on finding an NF2 specialist? I live in Wisconsin, but as many of us have found, if you have something serious AND rare, you will probably have to travel. I'm hoping for the best, but preparing for the worst. It'd be nice if I got more done in a day. :-\
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My neurotologist is at Univ of Iowa. I have had 2 ANs-one on each side plus a facial neuroma on the same side as the first AN. Several years ago he told me he had around 25 NF2 patients. That could be more or less now. Univ of Iowa has a NF clinic but that is more for the NF1 patients which is a bit different. I am not sure what the Univ of Wisc in Madison has but that is where I would check first. I know one of the Fellows went there after his Fellowship at Univ of iowa but he has moved on from there over time. My surgeries were in 2001,2006 and 2008. I have not heard of any mosaic NF2ers having an eye tumor. That is more likely in the young hereditary NF2er who has a more serious chance of more tumors including the spinal tumors. Have you googled any of the NF2 sites as I know in the past the clinics have been listed.
Cheryl R
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Any suggestions on finding an NF2 specialist? I live in Wisconsin, but as many of us have found, if you have something serious AND rare, you will probably have to travel. I'm hoping for the best, but preparing for the worst. It'd be nice if I got more done in a day. :-\
Former Wisconsin resident here. Unfortunately I'm not sure of any NF2 specialist in the area.
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Any suggestions on finding an NF2 specialist? I live in Wisconsin, but as many of us have found, if you have something serious AND rare, you will probably have to travel.
There are NF clinics in Madison and Milwaukee, though they don't seem to see many NF2 patients at either. Milwaukee only 2 listed, and Madison only 1! Take a look at http://www.ctf.org/understanding-nf/find-doctor#search-by-state (http://www.ctf.org/understanding-nf/find-doctor#search-by-state) to find an NF specialist. Will your insurance let you travel out of state?
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Thank you for the info. I'm setting up my followup MRI (too much coughing last month) and consult. As far as going out of state, yes, and to all on this site, many neurosurgeons and anaesesiologists we need are not in anybody's network. Appeal. I think of travel as the least troublesome part of this.