Author Topic: Gamma Knife to Surgery to Cros Talk  (Read 1981 times)

tsaff88

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Gamma Knife to Surgery to Cros Talk
« on: August 18, 2017, 12:15:42 pm »
As with most of the people here it's been a long, strange trip.....

In 2004 tinnitus appeared in my right ear for no apparent reason.  My then Primary Care Doc was clueless.  Luckily I was seeing a sharp ENT for an unrelated problem.  He suspected an AN right away and, after some preliminary testing, referred me to a specialist.  After confirming the AN we monitored for 5 years till it started growing anew.  It was small, about the size of the tip of my little finger, and, not crazy about someone drilling a hole in my head, I opted for the Gamma Knife.  Two and a half years later It started growing again.  So this time it was trans lab surgery. The surgery was smooth and successful.   As a result of the GK my vestibular nerve was shot anyway so I didn't suffer any of the post surgery nausea issues.  There were only a couple post surgery issues (aside from the continued tinnitus).  My balance is bad without something to focus on, so in the dark and among large crowds, I use a walking stick.  The other issue is an intermittent thumping in my head when sleeping.  It usually wakes me at least once a night, sometimes more depending on the weather.  Movement makes it stop for a while, sometimes the rest of the night.  All things considered, not too bad.  The scar tissue has been consistent in size for the past 4 MRIs so now, 4.5 years after the surgery, it's time for the next step. I'm going to take delivery of a Phonak Cros hearing aid in week or so. 

HollyA

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Re: Gamma Knife to Surgery to Cros Talk
« Reply #1 on: August 20, 2017, 11:20:20 am »
Hi, I'm curious if you second guess doing Gamma Knife first and would have gone for surgery from the start?  I'm close to making my treatment decision and am leaning towards GK.  It's good to hear that you had a successful surgery after GK.  I know there's no way of knowing what's going to happen, but I figure it's worth a shot to start with and if surgery ends up in the my future, I'll cross that road then. 
MRI May 2015, 1.3 cm
MRI July 2017, 1.8 cm
Gamma Knife Oct 2017

tsaff88

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Re: Gamma Knife to Surgery to Cros Talk
« Reply #2 on: August 20, 2017, 12:33:40 pm »
Hi,  I don't regret the GK at all, even with the regrowth.  I went back and forth on the initial decision, and it really boiled down to the GK being much less intrusive.

While waffling on the decision I ran into another person who had suddenly lost the use on one vestibular nerve (non-AN related) and her description of the resulting nausea made the final decision on GK that much easier. Finances weren't really a consideration because of health insurance. With the GK I went in first thing in the morning and was home by noon.  With the surgery I spent four days in the hospital and wasn't really right in the head till six months later. 

I'd read all the stories about how difficult surgery is after a GK, but the surgeon subsequently reported that there were no complications as a result of the GK. 

Bottom line on my initial decision was if the GK works, great! If not, fall back on surgery.  That's the way it worked out, and I believe the initial GK decision was the right one for me.

Cheers,

HollyA

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Re: Gamma Knife to Surgery to Cros Talk
« Reply #3 on: August 20, 2017, 04:00:36 pm »
Thanks tsaff88!  I truly appreciate hearing your perspective and experience.  Best of luck with the next step of your journey with Crocs.
MRI May 2015, 1.3 cm
MRI July 2017, 1.8 cm
Gamma Knife Oct 2017

tsaff88

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Re: Gamma Knife to Surgery to Cros Talk
« Reply #4 on: August 20, 2017, 04:12:42 pm »
Best of luck HollyA whichever way you decide to go.