General Category > NF2
What do I do now?
oh, now what:
In '98 I had a (huge) ovarian tumor, initially thought to be stage 4 cancer but diagnosis was changed a couple months after surgery.
oh, now what:
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. :-\
Cheryl R:
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
Willbur:
--- Quote from: oh, now what on April 27, 2017, 01:02:46 pm ---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. :-\
--- End quote ---
Former Wisconsin resident here. Unfortunately I'm not sure of any NF2 specialist in the area.
Susan A:
--- Quote from: oh, now what on April 27, 2017, 01:02:46 pm ---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.
--- End quote ---
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 to find an NF specialist. Will your insurance let you travel out of state?
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