Author Topic: update on post GK  (Read 919 times)

LakeErie

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update on post GK
« on: November 20, 2017, 04:01:57 pm »
It is now 13 months post GK and to summarize:Oct 2016 procedure resulted in central tumor necrosis which caused edema in the brain adjacent to the tumor. That swelling, which impacted the facial nerve to a House Brackmann Grade 4 paralysis, was diagnosed by MRI on Feb 20 2017. After Decadron taper of 4 weeks, and 3 months time, MRI May 22, 2017 showed 30% reduction in edema and facial neuropathy up to HB Grade 2. This morning was next 6 month MRI and imaging showed the edema resolved completely and the tumor had resolved as well and flattened. The tumor measurement is now a couple mm's smaller, unusual in my neurosurgeon's experience at this point and my next MRI is in one year.
My facial droop persists but is not apparent when my face is at rest, I am probably a permanent HB grade 2. My synkinesis that started three months ago persists but is mild. I asked neurosurgery today for a referral to someone in facial retraining to be sure the synkinesis does not get worse. They are getting back to me on that.
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

v357139

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Re: update on post GK
« Reply #1 on: November 21, 2017, 07:49:32 pm »
Hi Erie.  Sounds like you are making decent progress, and I hope it continues.  You've given lots of good advice to others on the forum, including me.  You may know already, Jackie Diehls is supposed to be the best for facial training.  Best of luck with it.  I'm sure it will go well.
Best regards,
Rich 
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!

LakeErie

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Re: update on post GK
« Reply #2 on: November 22, 2017, 02:29:20 pm »
I appreciate your reply and am glad to read you have done so well ( in your other comment today. ) I still have some degree of deficits, facial, vocal cord, swallowing, and numbness, but all in all I am doing well given all the problems I have had with this tumor for 6 years, and colon cancer between the microsurgery and GK ( there is no evidence of disease at present with the colon cancer. ) Good luck
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

v357139

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  • Posts: 455
Re: update on post GK
« Reply #3 on: November 26, 2017, 05:24:17 pm »
Wow that has been alot.  I am so happy there is no evidence of colon cancer.  Thanks again and best of luck to you also.
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!

 


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