Author Topic: 3-1/2 YEAR GK FOLLOW-UP... STILL ISSUES  (Read 7187 times)

mindyandy

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Re: 3-1/2 YEAR GK FOLLOW-UP... STILL ISSUES
« Reply #15 on: January 29, 2012, 09:29:39 am »
Have a good trip Windy. Don't think about AN at all (hard to do). We will talk to you when you get back. Now I"m going to try to research who this guy is....LOL
I do know there was a gal on here that it had happened to her. She is on FB and she told me her story. Clarmst I believe is here name here.
Mindy
« Last Edit: January 29, 2012, 09:31:17 am by mindyandy »
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

windy

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Re: 3-1/2 YEAR GK FOLLOW-UP... STILL ISSUES
« Reply #16 on: February 04, 2012, 11:23:51 am »
I am back from my trip and received an e-mail from Lunsford that I need to consider another GK treatment or surgery. He said I was in the 2% of cases. I am devastated to think I have to go through treatment again. I am not sure what I am going to do now. I will be thinking for a while. He mentioned my brain zap issues may be from vestibular problems.

Fortunately, I had a great trip and put the AN behind me. I was in an area of low humidity of had no symptoms of head or ear pain, which made it all the better. I seldom thought of the AN. Now, it is back on my mind. 
* Diagnosed w/AN (9mm x 11mm x 9mm) - 6-10-08
* GK @ UPMC w/Dr. Lunsford - 8-5-08
* Stable MRI - Aug. 2009
* 2 MM's Growth - Aug. 2010
* Lost 60% Hearing - Dec. 2010
* More Growth?? - Wait & Watch - Jan. 2012
* 1 MM Shrinkage - Aug. 2012
* 2 MM's Shrinkage - Aug. 2013
* Slight Shrinkage - Aug. 2014

mindyandy

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Re: 3-1/2 YEAR GK FOLLOW-UP... STILL ISSUES
« Reply #17 on: February 04, 2012, 11:32:31 am »
Windy
I'm very happy to hear you had a great vacation. Sorry to hear about your news. How much of an increase did they say? Do you have symptoms? Hearing loss? Facial sx? It doesn't seem very big so you have time. Have another scan in 6 months. No need to rush into making decisions. Get opinions. I too am in the same situation as you. I jumped the gun and scheduled surgery since I was in pain. Now I have no pain and am wondering if I should just wait and see.

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

windy

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Re: 3-1/2 YEAR GK FOLLOW-UP... STILL ISSUES
« Reply #18 on: February 04, 2012, 11:45:16 am »
Mindy, thanks for the reply. Well, the last report measured the tumor at 1.2 x 1.7 cm, up from 1.1 x 1.5 cm in 2009. Lunsford said he could not really see a difference from the 2011 scan. He, like my area neurosurgeon, said he had seen an enlargement overall from my scans, since treatment. Lunsford did say I had lost more hearing to a 28% hearing recognition, but it was actually 54% hearing recognition in my last audiogram. I think he did not see the last report. Other than the brain zaps since April 2011, there are not new symptoms. Keep me posted Mindy on you!
* Diagnosed w/AN (9mm x 11mm x 9mm) - 6-10-08
* GK @ UPMC w/Dr. Lunsford - 8-5-08
* Stable MRI - Aug. 2009
* 2 MM's Growth - Aug. 2010
* Lost 60% Hearing - Dec. 2010
* More Growth?? - Wait & Watch - Jan. 2012
* 1 MM Shrinkage - Aug. 2012
* 2 MM's Shrinkage - Aug. 2013
* Slight Shrinkage - Aug. 2014