attn NF2 patients

[hgtvqueen]

Hello all,
My 15 yr old daughter was diagnosed with NF2 when she had tumors removed from her spinal cord 2 years ago.  We discovered bilateral AN and about 8 other very small lesions we are watching. One of the AN's is growing a bit and we are working with the Neurosurgion to determine GK vs. surgery.  I don't have the exact measurements of the tumor, but it is considered small - moderate in size. Her hearing is good, although very slightly impaird on the larger AN side.  Our doctor told us all, point blank, that she would lose her hearing completely at some point regardless of treatment and that we all should learn sign language soon. I am scared out of my mind; however, my daughter seems to be handling it better than I. 

I have a hard time believing this. Do NF2  patients ALWAYS and COMLETELY lose their hearing??   I asked him this question, but didn't get a yes or no response.  It doesn't seem reasonable as all patients are different. 

[RattieLady]

I lost my hearing in my right ear in 2001, i was diagnosed with NF2 in 2002 then lost my hearing in my left ear early this year. So yes it can happen.

[tony]

I saw your note and I do understand your fears
I am NF2 and have read extensively on it - it is an unusually difficult subject
owing to the rarity of the condition, and as the term covers such a broad range
of conditions. However - the more I read - the less I know
Basically sign language/lip reading are usually best learnt while you still have hearing
- not quite so easy when you are already deaf - the doc is being unusually frank with you
As the lady concerned is quite young she may be able to learn to lipread quite well
- as long as the family can learn to exaggerate the lip movements when speaking
they may not have to learn sign. My suggestion here is that you speak to people who have
been through the experiance
"Do NF2`s always lose the hearing ?"
Historically over the last 20-30yrs - Yes, it is just a question of time
If the tumour does not get the hearing - the treatment often does
More recently lower levels of radiation (last 10 yrs) suggest preservation
is possible in some cases - but it is not certain or forever.
You might consider contacting the NF2 Crew - which is a NF2 support group
Key suggestion now is the make sure the person is on a proper
dedicated NF2 clinic - for regular scans and check ups
You would be amazed at how many Docs have seen one or two cases
in their working lives - deal with people who do know the answers,
and what to look for.
I think its most important for you to assist her to have as full and complete
life as possible - given any disabilities she may aquire
For example there are "Text phones" - which convert sound to text
also she/you will need to look at career options where hearing 100% is not essential
I dont  think "I am 5 % disabled - think  I AM 95% ABLE !"
I am sorry to have write in this way  - it is a difficult time for sure , but I dont
see the point of avoiding some very difficult issues.
I am sure everyone on this group wishes the both of you well for the future,
and if you need any further support or suggestions
please do ask
Best regards
Tony
England