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Author Topic: What do I do now?  (Read 20566 times)

oh, now what

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What do I do now?
« on: March 30, 2017, 09:21:52 PM »
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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midfossa Wilkinson, Schwartz, Basta, Roberts @ House 4/13/2016, sticky 1.2 x 0.7 x 0.8, no pain ever, facial nerve preserved (camera cannot tell any difference) hearing not, age 64, walking 2 miles daily unless lightning, heat or ice--if you can, work up to walking 2 miles per day, the magic pill

Willbur

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Re: What do I do now?
« Reply #1 on: April 01, 2017, 06:12:54 AM »
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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Diagnosed@29
10/13/16 - 21x23x19
1/16/17 - 22x23x19
1/24 - Surgery Successful
3/6 - MRI/CT Scan No Regrowth

oh, now what

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Re: What do I do now?
« Reply #2 on: April 02, 2017, 12:30:35 PM »
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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midfossa Wilkinson, Schwartz, Basta, Roberts @ House 4/13/2016, sticky 1.2 x 0.7 x 0.8, no pain ever, facial nerve preserved (camera cannot tell any difference) hearing not, age 64, walking 2 miles daily unless lightning, heat or ice--if you can, work up to walking 2 miles per day, the magic pill

Willbur

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Re: What do I do now?
« Reply #3 on: April 19, 2017, 09:29:14 PM »
Even if it's mutated it would be hard to tell.
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Diagnosed@29
10/13/16 - 21x23x19
1/16/17 - 22x23x19
1/24 - Surgery Successful
3/6 - MRI/CT Scan No Regrowth

Susan A

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Re: What do I do now?
« Reply #4 on: April 26, 2017, 06:53:32 PM »
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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2011 8 x 7 mm AN, & 20 x 22 mm M found, both on the left. Mosaic NF2 diagnosed. Some hearing loss
2014 hearing 30% on left, now using hearing aid (HA)
2015 Now have CROS HA - no longer hear enough for HA to be useful in AN ear
2016 Use an FM system on occasion at work to supplement HA

oh, now what

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Re: What do I do now?
« Reply #5 on: April 26, 2017, 09:14:27 PM »
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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midfossa Wilkinson, Schwartz, Basta, Roberts @ House 4/13/2016, sticky 1.2 x 0.7 x 0.8, no pain ever, facial nerve preserved (camera cannot tell any difference) hearing not, age 64, walking 2 miles daily unless lightning, heat or ice--if you can, work up to walking 2 miles per day, the magic pill

oh, now what

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Re: What do I do now?
« Reply #6 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. :-\
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midfossa Wilkinson, Schwartz, Basta, Roberts @ House 4/13/2016, sticky 1.2 x 0.7 x 0.8, no pain ever, facial nerve preserved (camera cannot tell any difference) hearing not, age 64, walking 2 miles daily unless lightning, heat or ice--if you can, work up to walking 2 miles per day, the magic pill

Cheryl R

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Re: What do I do now?
« Reply #7 on: April 27, 2017, 11:12:29 PM »
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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Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

Willbur

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Re: What do I do now?
« Reply #8 on: May 01, 2017, 10:45:24 AM »
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. :-\

Former Wisconsin resident here. Unfortunately I'm not sure of any NF2 specialist in the area.
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Diagnosed@29
10/13/16 - 21x23x19
1/16/17 - 22x23x19
1/24 - Surgery Successful
3/6 - MRI/CT Scan No Regrowth

Susan A

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Re: What do I do now?
« Reply #9 on: May 03, 2017, 07:09:12 PM »
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.

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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2011 8 x 7 mm AN, & 20 x 22 mm M found, both on the left. Mosaic NF2 diagnosed. Some hearing loss
2014 hearing 30% on left, now using hearing aid (HA)
2015 Now have CROS HA - no longer hear enough for HA to be useful in AN ear
2016 Use an FM system on occasion at work to supplement HA

oh, now what

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Re: What do I do now?
« Reply #10 on: May 14, 2017, 04:16:09 PM »
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.
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midfossa Wilkinson, Schwartz, Basta, Roberts @ House 4/13/2016, sticky 1.2 x 0.7 x 0.8, no pain ever, facial nerve preserved (camera cannot tell any difference) hearing not, age 64, walking 2 miles daily unless lightning, heat or ice--if you can, work up to walking 2 miles per day, the magic pill
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