ANA Discussion Forum
AN Community => AN Community => Topic started by: marie on October 16, 2006, 10:12:39 am
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On October 4th I had my 14th consecutive watch and wait MRI . As I normally do, I Had a copy of the CD sent to Dr. Brackmann. He has notified me that my AN is still small and the same size as last year. Also, my hearing test is also unchanged. At this point I'll take all this as good news.
Radiation or surgery has too much risk of killing off my remaining fairly good hearing. (My other ear is deaf).
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Sounds like good news to me!! :D Hooray for you!!!!!!
Sue in Vancouver
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Sounds like awesome news, Marie ::) Way to go.
BrendaO
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Excellent news Marie!!!! Thanks for sharing - this is inspiration for those of us that are new to the watch and wait mode!
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Forgive me, you must be NF2 (as am I )
I am quite staggered - I dont think I have ever heard of
an NF2 being non-moving for 14yrs (even after treatment)
I knew it could be slow moving - or mild as some say,
but 14 yrs..- its hard to talk of good fortune for an NF2
but, given the condition, that must be about as good as it gets ?
Final thought - some of the Gamma knife results and FSR (@12-14Gy)
are getting quite reasonable hearing survival rates - even for NF2s
It is an option to consider (maybe)
Best Regards
Tony
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Tony
This second-side tumor was discovered in 1993 during the MRI done to make sure the left-side AN was really gone.
It was so small they weren't sure what it was for sure. It has been growing slowly but surely over the years. This year's size was being compared with last year's size. In 2002 I had bode reduction surgery to enlarge the auditory canal so the tumor had growing room without causing hearing loss . This would hopefully give me servicable hearing for 5 to 20 years. The next step was to be surgical removal of the AN and installation of ABI.
I am thinking more and more of checking into radiation of some sort.
I have been told that I probably do have NF2.
Thank you all for your supportive comments.
Marie
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Good for you! I am only on my second MRI this last summer but my doc says he has had several patients who have never been treated since he diagnosed them when he started his practice. He said "we don't treat rocks" meaning small enough tumors that aren't causing problems. I hope I can go as long as you too. Actually longer.
Caroline
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To Marie - Best wishes with all your troubles - if it really is NF2 then it sounds like the type that has a major impact some time after your 120th birthday
(which is probably one of the better options ?)
Anyhow I have a contact at the (US) NF2 crew (like this board -but NF2)
if you want I can put in touch
I hope your fortune holds
Best Regards
Tony