Author Topic: Post treatment issues come & go  (Read 2031 times)

mindyandy

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Post treatment issues come & go
« on: July 31, 2013, 07:13:18 pm »
Hey guys & gals
I want to ask for those of you that had treatment & have no growth...do you still get strange happenings? I still sometimes get facial numbness that comes & goes. Nothing big but noticable. I sometimes get a little off kiltered & feel a bit dizzy. I guess I don't understand why do my symptoms come & go?

Any experiences? I'd love to hear.
Thanks
Mindy
14mm dx 9/07. CK done Seattle  1 year MRI showed some shrinkage. 4 year MRI 2mm growth nothing conclusive. Trigminal nerve involvment Retrosigmoid Friedmand/Schwartz HEI March 7,2012

LakeErie

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Re: Post treatment issues come & go
« Reply #1 on: August 01, 2013, 09:51:31 am »
I had a subtotal removal almost 2 years ago and no regrowth to date, 2nd MRI post surgery is in Oct this year.
I still have the problem of feeling off balance occasionally, especially when exiting a building. Going from indoors to outdoors disorients me.
I had tingling and facial numbness pre-surgery and they were worse after the operation. Those issues have improved and are much less noticeable, but they do occasionally recur.
The burning sensation on my tongue is gone, but the numbness on the AN side persists.
On the whole, the symptoms are better but are still present once in a while.
4.7 cm x 3.6 cm x 3.2 cm vestibular schwannoma
Simplified retrosigmoid @ Cleveland Clinic 10/06/2011
Rt SSD, numbness, vocal cord and swallowing problems
Vocal cord and swallowing normalized at 16 months. Numbness persists.
Regrowth 09/19/2016
GK 10/12/2016 Cleveland Clinic
facial weakness Jan 2017

phantagrae

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Re: Post treatment issues come & go
« Reply #2 on: August 01, 2013, 11:33:58 am »
The only thing I can offer is that I have noticed that my symptoms--really just facial numbness for me--seem to be less noticable when I am well-rested, especially when I first wake up in the morning or just after a nap.

I am still in the middle of being treated, just two weeks into a 6-week plan of fractionated GK, so I can't speak to post-treatment symptoms, though my doctors have said that my facial numbness might not go away.
Numbness on right side of face beginning some time in 2012 through early 2013
MRI 4/15/13
20mm x 19mm x 16mm intra and extra canalicular AN on Right Side.  ("Largely extracanalicular")
FSR treatment beginning on July 22, 2013--going for 30 treatments