Author Topic: How is NF2 determined  (Read 5509 times)


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How is NF2 determined
« on: January 24, 2007, 08:12:46 pm »
Hi all -
Have been lurking for several months and have had appreciated alll the info.  Have not done alot of posting as my left hand is uncooperative since surgery and typing is difficult.
My 6 month  follow up MRI showed a tiny (3mm) facial neuroma on the right side.  My acoustic neuroma was on the left side.  The MRI report said "in hindsight"  the facial neuroma was there on my first, pre-surgery MRI (6 mons. ago) also.  All the research I've done says the definitive diagnosis for NF2 is bilateral acoustic neuroma, other types of neuromas not mentioned very often.  Not much input from my surgeon, seems he wants to wait for the next MRI, which I will be having in a couple of months.  I have also experienced leg/back pain, foot numbness for the past 3-4 years, which seems more threatening with NF2 possibly in the picture.  Should I be asking for a spine scan ?
Would appreciate any input, info. I am 45, so I would probably looking at the less serious type ( Can't remember the names)

Best wishes,
3.1 cm AN left side diagnosed 4/13/06
Surgery (retrosigmoid) 5/16/06 5 days ICU, 10 days total in hospital
SSD, facial numbness
Dr. Millen/Dr. Ahuja St. Luke's Medical Center, Milwaukee


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Re: How is NF2 determined
« Reply #1 on: January 25, 2007, 02:08:15 am »
I understand your worries...but
It is possible - but I would have thought unlikely
Firstly the second is very small and may not be a tumour at all
- it may take a few years to clear that one up
ie if it does not move much at all in 24mths then
maybe not
Secondly the early stage on spinal tumours is more
often lack of movement/flexibility/power, maybe touch sensation
in a particular limb or side of the body
- but seldom pain etc.
(foot numbness is a maybe here)
The docs have a manual body check where
they check up/down left vs right plus feeling on all functions
that might give some clues
It might be worth getting a check done here
- maybe check if there is an NF2 specialist
within traveling range ?
The later type is Gardener or Gardiner NF2
I think you may find either the current state of
stress/nerves (many of us) or you are in
is causing tension, maybe pain
Also the spinal type tumours are usually third place
behind the L/R accoustic/facial type
- in your case these are quite small
so the spinal ones are unlikely to be large
It may simply be unrelated - due to an earlier fall
or impact, long forgotton about ?
Best regards


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Re: How is NF2 determined
« Reply #2 on: January 25, 2007, 10:13:08 am »
Ellen- One thing about being on a Nf2 thread-you do not have to compete for space. My story- I am an NF2. !.5 CM in left ear in 1988. Radiation not an option back then-had it surgically removed-no problems but left me deaf in that ear. In 2005 my right side of my face went numb at work. MRI indicated a 2.4 CM AN. Surgery would leave me deaf so I opted for FSR radiation at Johns Hopkins this past summer. Hearing at that time was 96%. At 6 months out-it is now 90%. However have a hard time because most voices sound distorted. Like I had my head underwater. My last 6 month MRI showed signed of Necrosis however also showed a lesion on the left that could be scar tissue. My left ear has been aching like crazy the last few weeks. Using otic solution with no effect yet. Send my MRI's too surgeon who did my surgery back in 1988 for second opionion-could this be a facial neuroma. What are your symptoms. My feet went numb this summer and have stayed that way. Thanks to Tony on this forum I had a recent Spinal MRI. No tumors found. However-found nerve signals too feet are slow-not normal. Had nerve conduction test done last fall. Back doctor said this was duer too NF2 but may or may not progress. I am going to post as soon as I hear from surgeon who did my surgery for his conclusion. All of a sudden my left ear aches some days like something fierce and feels full. Thanks Ron.