Author Topic: Introduction  (Read 1470 times)


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« on: April 30, 2018, 05:49:01 am »
I believe I joined this group a number of years ago when I was newly diagnosed, but since I was asymptotic and my MRIs showed little growth,I was on WW and I pretended the AN wasn’t there. Well I woke up one morning last month with major hearing loss on the AN side which prompted me to visit my neurologist. AN is about 1.2cm at this point and being that I’m young (34), she  recommended that I start weighing my options. Obviously the idea of surgery scares the heck out of me, but the idea of radiation probably scares me more, being that I’m still  young. To make matters complicated, I have 5 young kids at home, including twin babies that I’m still breastfeeding!
I have an appointment to speak to another’s neurologist/neurosurgeon team (Roland and Golfino) and will see what they have to say.
Maybe one of you were in a similar situation? Looking for any advice possible! Thanks!


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Re: Introduction
« Reply #1 on: May 01, 2018, 12:59:25 am »
Welcome back
The decision is a difficult one.....radiation vs surgery.....and it's a personal decision.
When my orginal tumor was found there wasn't gammaknife here in Ontario (and it was likely too large) however the regrowth I ended up with I could have had gammaknife however I figured why expose myself to that when I've already lost all there is to loose the first time around.
What does your gut say ?
Have you made a pro/cons list ?
Take care
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)