Author Topic: Semi-Obligatory Update- Seven Years Post-surgery  (Read 2008 times)

Tod

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Semi-Obligatory Update- Seven Years Post-surgery
« on: February 21, 2017, 08:34:45 am »
...and five years post-FSR.

Short: All is good. Still coughing. Still dry eye. Still SSD. Still lots of tinnitus. Increasingly facial asymmetry - but it's okay, it makes look more me.

Long. For those that don't know my story, 32 hours of surgery to remove 90-95% of a golf ball-sized tumor. Quite a few deficits included loss of voice, swallowing difficulties, facial weakness, and the the other typical stuff. Story here https://randomdatablog.com/brain-tumor/).

Over the weekend I wrote a blog post post with images showing my "descent" into asymmetry. https://randomdatablog.com/2017/02/19/seven-years-of-asymmetry/

Life is good.

-Tod
Bob the tumor: 4.4cm x 3.9cm x 4.1 cm.
Trans-Lab and Retro-sigmoid at MCV on 2/12/2010.

Removed 90-95% in a 32 hour surgery. Two weeks in ICU.  SSD Left.

http://randomdatablog.com

BAHA implant 1/25/11.

28 Sessions of FSR @ MCV ended 2/9/12.

LakeErie

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Re: Semi-Obligatory Update- Seven Years Post-surgery
« Reply #1 on: February 21, 2017, 05:37:05 pm »
thanks for the link to your datablog and the photos. After GK  for regrowth of my tumor last Oct 2016, I experienced facial weakness starting Jan 25th and now after 4 weeks with Decadron I am about the same. A scan Feb 10th found a swollen tumor and swelling in the  brain adjacent to the tumor, both the cerebellum and pons. Apparently, once edema is present, time to resolution is unpredictable and in fact resolution itself is unpredictable. Your experience and photos are encouraging as I hope my weakness does not progress.
The progression you see is not visible to me, and I would characterize my weakness as asymmetry, too. In fact my primary care doctor characterized it as just that. Biggest problem is my right eye with incomplete eyelid closure as the lower lid droops badly.
Thanks again
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

caryawilson

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Re: Semi-Obligatory Update- Seven Years Post-surgery
« Reply #2 on: February 22, 2017, 09:30:09 am »
Remarkable story.  Huge inspiration, and puts my issues into perspective.  Thanks.
4.5 cm, 17.5 hour modified retro surgery
John Hopkins: Lim / Carey
Complete Facial Paralysis
Facial Plastic Surgeon (amazing): Dr. Boahene

bethtretrault

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Re: Semi-Obligatory Update- Seven Years Post-surgery
« Reply #3 on: February 23, 2017, 07:40:24 pm »
Thanks for the update Tod!You have helped me up to and through my surgery.
beth
12/2013 5mmx4mmx4mm left
tinnitus, w&w
5/2015 7mm-louder tinnitus, occasional dizziness
retro sigmoid 11/2015