what were the first symptoms?

[Kathleen_Mc]

I am wondering, from the NFII folks what appeared first?
I had a left AN removed in 1990, in 1998 found out it had returned, the doc's weren't sure if 1.they left a cell or two behind the first time or 2. if I grew an entirely new one in the same spot......which seems less likely to me as the first time the doc. removed the 7-10th cranial nerves hence.....what would an entirely new one grow on? I spent years worring about being NF II and had basically put it from my mind the last couple of years as nothing new had "appeared" to indicate I have it........BUT a couple of weeks ago I had what appeared to be a cyst removed from my face......when the doctor cut it open he told me it looked like it might be a neurofibroma!....awaiting the biopsy results.
I had a spinal MRI about two years ago for another reason, all clear as well as a head MRI about 4 years ago all clear.
I do not have any relatives with NFII that I am aware of however my father's family comes from Ireland and in years gone health care wasn't that good and such things would not have been talked about.
Any thoughts?
Kathleen

[Cheryl R]

Kathleen, I had my first AN surgery in 2001.  The AN on the other side was found a couple years later.     Then the facial neuroma appeared on the first side and grew fairly fast over a year so surgery in 2006 and the CSF leak as they had used a new product to help hold things in place and 3 people had leaks,including me.   Another surgery then 2 weeks after the FN surgery which also did a nerve graft from the ear at the same time.        Then the surgery on the other side in 2008 as it had started growing and was almost all deaf.     I am the lucky person with the very rare happening of hearing coming back and no CI needed.        I have no family also with it.        No spinal tumor but has been a couple years since did spinal MRI.    No skin tumors and so hope this is all I ever have.     April is my MRI time and I get very nervous when it is due.              I think your immediate family would be involved if was a hereditary one and not back a few generations as then closer family would also have it.                       This all started when I was 49 so older adult and thus more likely to have the "milder" version of it.        I am very very lucky to have done as well as I have even with several annoyances that will always have.              Has to be frustrating to not know if one does or doesn't have it.                                   Cheryl R

[Cheryl R]

Kathleen, I should have added that I had only had the usual AN symptoms one may have with ANs.       Tinnitus, ear fullness,hearing loss.
 The facial neuroma was just starting to show some droop when it was found.              The ones with more severe NF2 found at a much younger age are the one who have more issues with skin lesions,eye issues, more various types of tumors etc.     
                                                               Cheryl R

[Raven]

My first symptom was waking up one morning totally deaf in my left ear, had perfect hearing the day before. MRI a few weeks later showed bilatteral ANs, both were 1cm. Another MRI of my spine showed 5 small tumors. This happend in 2007 when I was 48. Left AN removed, W & W on the right side (no growth since being diagnosed). I do have mild hearing loss in the right side. Just got a Phonak Bicros last month and all I can say is WOW, I'm hearing sounds I haven't heard since this crap started. I do have tinnitus in both ears and my balance is real bad, no facial problems. No evidence of anyone else in my family having NF2.

John

[nftwoed]

Hi Kathleen;

   You wrote: "doc. removed the 7-10th cranial nerves hence.....what would an entirely new one grow on?"
   The 7th cranial nerve is the facial nerve. Are you sure that one was removed? If not removed, the facial nerve remains as a starting point for a new AN.
   My second AN showed on MRI 17 years after the first one was removed Translab, but, it's likely to have been growing several years with it's presence unknown.
   I'm not certain, but believe it's normal to have schwann cells with the myelin sheath covering nerves. It's just with AN, the schwann cells multiply and build up. There are too many.
   One does not have to have bilateral ANs for an NF-2 Dx, but, eventually, such is the case.
   The biopsy results will be interesting, but, I think not definitive for an NF-2 Dx.


 before manifesting with mild hearing loss and also, dizziness which came in spells at first.

I am wondering, from the NFII folks what appeared first?
I had a left AN removed in 1990, in 1998 found out it had returned, the doc's weren't sure if 1.they left a cell or two behind the first time or 2. if I grew an entirely new one in the same spot......which seems less likely to me as the first time the doc. removed the 7-10th cranial nerves hence.....what would an entirely new one grow on? I spent years worring about being NF II and had basically put it from my mind the last couple of years as nothing new had "appeared" to indicate I have it........BUT a couple of weeks ago I had what appeared to be a cyst removed from my face......when the doctor cut it open he told me it looked like it might be a neurofibroma!....awaiting the biopsy results.
I had a spinal MRI about two years ago for another reason, all clear as well as a head MRI about 4 years ago all clear.
I do not have any relatives with NFII that I am aware of however my father's family comes from Ireland and in years gone health care wasn't that good and such things would not have been talked about.
Any thoughts?
Kathleen

[Kathleen_Mc]

Hi Kathleen;

   You wrote: "doc. removed the 7-10th cranial nerves hence.....what would an entirely new one grow on?"
   The 7th cranial nerve is the facial nerve. Are you sure that one was removed? If not removed, the facial nerve remains as a starting point for a new AN.
   



I am very sure the 7th nerve was removed, at least from the general area anyway, have had multiple "plastic repairs" to my face to try to repair the "damage" (hypoglossal transfer, muscle and facia transfer as well as nerve taken from my leg and put in there). My original surgeon was very surprised with the regrwoth/another growth in the same area for sure......he told me he couldn't be 100% sure if the original tumor grew back due to his "missing a cell or two" the first time around or if I was unlucky enough to just grow another entirely new tumor in the same place.
I go back to the plastic's guy this Thurs. to get the biopsy results from this thing taken off my cheek, guess will go from there.
Kathleen

 

[Kathleen_Mc]

GOOD NEWS!
The thing that was removed from my face was a plain neuroma......so far no NFII for me, thanks everyone

[Kathleen_Mc]

And so it continues
I developed tinnitus in my "good" ear more than 10 years after my original resection ( hence 10 years after SSD). When I was worked up nothing was found. ( that was a couple of years ago).
In the recent few weeks I have become very unsteady, keep tipping towards the side of the "good ear" , the sound of the tinnitus has changed, at times I get this really loud buzzing in my ear accompanied by pain and followed by silence ( which I am unsure if it's lack of any hearing or just the absence of tinnitus). I haven't any symptoms of being ill as in cold/flu.
I saw my GP last week and am going for either an MRI or CT tomorrow ( not sure which as ordered both, last year they refused to do an MRI due to an implanted heart monitor I have which the manufacture says I can still go into the MRI with). I was referred to ENT but that appointment isn't until middle of next month, still awaiting an appointment with a neurologist  ( most likely a very long wait).
For those who have had bilateral AN's......what were the symptoms you first had of the second AN ?
Kathleen

[Jeff]

Hello,
Unfortunately, both of my tumors were identified with the same scan. My symptom was a terrible headache. Oddly, my hearing in both ears was perfect, and changed only as a result of surgery. Both tumors were large when removed. I am doing well now. Let me know if I can answer any other questions.
Jeff