Author Topic: Regrowth: Who's got gammaknife twice ?  (Read 1274 times)

frenchgirl

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Regrowth: Who's got gammaknife twice ?
« on: October 07, 2022, 02:05:18 am »
Hello, sorry for my english, i am french !
My neuroma is getting bigger again, after translab and gammaknife. I have different opinions from doctors : new surgery or second time gammaknife...
I am looking for testimonials from people who have had two gammaknife treatments. For example, what was the size ? How long after the first gammaknife treatment ? Was it successful this second time ? Did you hesitate with surgery ? Thank you so much for your help !
melanie
3 X 3.5 X 2. 7 AN diagnosed 12/2017
03/2018 translab surgery ; facial nerve preserved ; hearing loss
02/2020 Gammaknife ; 0.499 cm3
11/2021 regrowth 1.032 cm3
09/2022 regrowth 1.579cm3  (1.2 X 1.7 X 1.7)
New surgery or new gammaknife ?

donjehle

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Re: Regrowth: Who's got gammaknife twice ?
« Reply #1 on: October 09, 2022, 05:17:00 pm »
Bonjour, frenchgirl!

Your English is much better than my French, so you do not need to apologize, as far as I am concerned.  Even though I took several years of French in high school and university, my French is very poor.

Melanie, I can understand why you might be afraid, especially since your treatments did not work.  It is scary enough having a treatment the first time, and then, when it doesn't work, and you have to do it again, what a major letdown!

I have not had my treatment yet since I am in a watch and wait protocol, but there are others in the forums who have had second treatments.  Hopefully, you will hear from them soon.  I know of some who have had a very successful second treatment.

My only recommendation based on the very little I know of your story is to make sure that the specialist performing your new surgery or gammaknife has a lot of experience in treating acoustic neuromas.  Some physicians attempt to do them without much experience, and their results are often not as good as one of the medical centers which treat acoustic neuromas on a daily basis.

I wish you well in your second attempt to have this taken care of!
Don
Burning Tongue, Loss of Hearing & Balance, and Tinnitus led to MRI. Very small AN found on 11/23/2021
While watching and waiting, lost significant hearing. WRS now at 12% (down from 100%). Was fitted with CROS system on 3/7/22.  Stable MRI on 7/29/22
No treatment yet.

gbly

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Re: Regrowth: Who's got gammaknife twice ?
« Reply #2 on: October 12, 2022, 01:09:37 pm »
frenchgirl,
Like donjehle says we are so sorry to hear you have regrowth, but so glad you are here.  If there is a place to get input from everyone, this is it.

From what I am reading you are not in the states, but if you are looking to maybe do the gamma knife or radiation, Dr. Jaboin is now located in Oklahoma and he is amazing.  I know that if anyone has answers to your questions, he will be able to give you them.

Good luck and please keep us posted on what your journey looks like.  Keep reading and know we are all here if you just need support and love.
v/r GB