Author Topic: Hemi facial spasms 2 yrs post GK  (Read 9180 times)

robinb

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Re: Hemi facial spasms 2 yrs post GK
« Reply #15 on: January 15, 2017, 11:20:15 am »
Hi Cathy-

So sorry to hear about your continued spasms. I found some research from when I was having them. I was told the same thing, they would be temporary and they were. I never discussed a surgery option for relief, but did research. I totally understand your frustration with not having Dr. L locally when you're having complications.

http://www.dystonia.org.uk/index.php/about-dystonia/types-of-dystonia/hemifacial-spasm

http://weillcornellbrainandspine.org/condition/hemifacial-spasm/diagnosing-and-treating-hemifacial-spasm
 The Weill Cornell has a link to upload your images and they will review.

Mayfield Clinic does too.

It may be time to seek another opinion, just for your own piece of mind with a local doctor.

Hope it gets better.

-Robin
AN Diagnosed 11-2012 right side
13mm x 7.2 mm
Gamma Knife 1/24/13
UPMC w/Dr. Lunsford
Officially a postie toastie!
See my treatment journal at: http://www.anausa.org/smf/index.php?topic=18291.0

extropy

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Re: Hemi facial spasms 2 yrs post GK
« Reply #16 on: July 23, 2018, 12:34:47 am »
hemi-facial spasms. they arrived today, 4 months after my GK due to a robust regrowth of my VS - retrosigmoid, 2014, sub-total resection (STR).
2014 - at age 65 problems with left ear (tinnitus, imbalances, deafness, short-memory problems, etc).
2014 - MR found VS, 3.5 cm circa.
2014 - Exeresis, in Rome, RS approach,  followed by hydrocephalus ... and shunt.
2018 - AN has regrown, volume is 2.6 cm3.
2018 - GK (Humanitas, Milan)

SueLL

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Re: Hemi facial spasms 2 yrs post GK
« Reply #17 on: July 24, 2018, 11:31:00 am »
If you have continued facial spasms that do not respond to gabapentin, I have had positive results with Tegretol.
Diagnosed with 1.3 x 1.2 x 1.3 mm right side AN – September 2013; Gamma Knife at UPMC July 2014; Retrosigmoid surgery at Tufts Medical Center June 2018 to remove 2.0 x 1.8 mm tumor

MG

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Re: Hemi facial spasms 2 yrs post GK
« Reply #18 on: July 20, 2020, 08:06:54 am »
Hello Cathyroe,

I am not sure you are still on the forum. Please reply back if you are. I am going through the same thing as you and would like to talk to you.

Thanks so much,

 MG
Resides Inverness, Fl.
Diagnosed w/ AN tumor Aug 2013  9x5x6mm
 2016  1.3 CM Touching Brain Stem 
'Wait and Watch' is over. w/ symptons of tinnitus along w/ ear pain and pressure most every day. Will be having Cyber Knife in June 2016