Author Topic: Introduction. Any advice?  (Read 3784 times)

allegro17

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Introduction. Any advice?
« on: December 18, 2009, 03:14:58 pm »
While I am not new to this board, I am a newly diagnosed NF2.  Currently SSD due to a right AN (post-op), with a 2mm tumor just found on the left.
I'm hoping for some advice.  I currently have good hearing in my left ear.  normal, functional hearing.  So here are some questions, for the moment:

What are the stats like for radiation treatment in NF2 patients?  I know this is generally a favorable hearing preservation method, especially for a tumor this small, but am also aware of skepticism surrounding the malignancy issue with NF2 specific tumors.

Has anyone had experience preserving hearing of any sort with NF2 or treatment, ABI aside?

Right now I am in no rush to make any decisions, but it's never too early to collect info!  I would like to try to figure out if I want to treat the tumor while it is very small (to hopefully decrease the potential damage done to hearing through treament), or keep my hearing "as is" for as long as possible by waiting it out for a while (possibly risking a greater chance of hearing damage through treatment).  I know treatment only gets more difficult as the tumor gets bigger, but also know that the likelihood of some damage to hearing through any kind of treatment is high, no matter what the size of the tumor.  Thoughts/advice/expereinces?



jerseygirl

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Re: Introduction. Any advice?
« Reply #1 on: December 19, 2009, 02:38:48 pm »
Hi, Laura,

As you know, I am at a risk to be formally diagnosed as NF2, so I am always collecting the information. Here is what I would do about it:

 1) try a natural supplement that is considered to be effective in some people: BIO 30. Search for it, in general and here on this forum.

 2) investigate the stage of testing  of the drug for NF2 (see Dr. Alan Rubinstein I told you about before). I might not take it now with just one tumor but would follow the news. I would consider it very seriously if I had multiple tumors. It might beat having many surgeries.

  3) join NF2CREW, also forum for NF2 members only. They will have more information on BIO 30 and medication. They will also  have stats on radiation.

  4) If the supplement does not work or medication is unacceptable, investigate middle fossa hearing preservation surgery or radiation.

Hope this helps.

          Eve
Right side AN (6x3x3 cm) removed in 1988 by Drs. Benjamin & Cohen at NYU (16 hrs); nerves involved III - XII.
Regrowth at the brainstem 2.5 cm removed by Dr.Shahinian in 4 hrs at SBI (hopefully, this time forever); nerves involved IV - X with VIII missing. No facial or swallowing issues.

nftwoed

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Re: Introduction. Any advice?
« Reply #2 on: December 01, 2010, 07:29:13 pm »
Has anyone had experience preserving hearing of any sort with NF2 or treatment?

   Yes; With a tumor that small and no hearing involvement, don't get caught up in 'watch and wait' or 'conservative management' scenarios. Radiation is likely to place a drag on hearing with it's adverse effets on cochlear ciliary hairs. Malignancy is nearly a non-issue. My unprofessional, but NF-2 pt. feeling is to have it surgically removed using the Mid-Fossa method BEFORE there is hearing involvement.

Raven

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Re: Introduction. Any advice?
« Reply #3 on: December 02, 2010, 07:24:35 am »
I lost hearing in my left ear overnight, two days before the surgery I lost hearing in the right ear, not all of it but enough that I could only hear sounds, not words. They removed the left side tumor, a week later they did a middle fossa decompression on the right side. Basically what it is the bony canal is enalarged where the 8th cranial nerve and the tumor reside to relief swelling. That was three years ago and I've been good to go since and the tumor has not grown either. The tumor is not removed under this procedure as it is not a guarantee hearing can be preserved, I was already completly deaf in my left ear.

This worked for me and I'm seriously considering a cochlear implant for the left side since the right side tumor has not grown. Note: the implant needs to be removed to have a MRI done, that is what is holding me back.

Hope this helps

John
7/10/07 hearing gone in left ear overnight
7/25/07 diagnosed with bilateral acoustic neuromas - aka NF2
11/7/07 left side tumor removal via middle fossa - 12 hrs.
11/15/07 right side decompression via middle fossa - 8 hrs.
Dr. Eisenman - University of Maryland Medical Center

 


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