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Author Topic: Symptoms 5 years post GK  (Read 2812 times)

Sefra22

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Symptoms 5 years post GK
« on: October 26, 2011, 11:00:54 am »
I had GK back in 2007, and all of my MRI'S have showed either no change or slight shrinkage. My last one was in May. For the last few months I hace experienced the same symptoms which started this whole journey 6 years ago. "Ice pick" headaches, fullness in the ear and, light headedness and twitching around my right eye. Anybody else experience this?
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Lisa from Portland, Maine age 46
Diagnosed June 2006
15mm X 17mm AN right side 80% hearing loss
GK March 14,2007 Dr. Noren, Providence RI
1 Year follow-up MRI shows "slight shrinkage".
2 Year follow-up MRI shows "No Change".
3 Year follow-up MRI "stable".
BAHA surgery 4-22-09 BP100 Sept. 2009

Jim Scott

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Re: Symptoms 5 years post GK
« Reply #1 on: October 26, 2011, 03:31:23 pm »
Lisa ~

I'm not a physician and would not attempt to 'diagnose' the reason for your symptoms.  However, I would suggest that you call your doctor and ask for an MRI to help explain the cause of the symptoms.  It may be part of the long term healing process but the MRI would put your mind at ease or alert you to any possible re-growth.  Of course, I hope it's the former.  Please let us know what happens.  Thanks.

Jim
« Last Edit: October 27, 2011, 12:00:15 pm by Jim Scott »
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4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

ppearl214

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Re: Symptoms 5 years post GK
« Reply #2 on: October 26, 2011, 07:45:53 pm »
Lisa

I happen to agree with Jim.  Dr. Noren is well known in the GK realm and I would have complete faith in him to advise you as to what is going on.  Ice Pick Migraines can also be caused by other reasons, ie: menopause, etc. but as for the other issues, I cannot answer.

Please let us know what your dr's say.
Phyl
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Sefra22

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Re: Symptoms 5 years post GK
« Reply #3 on: October 28, 2011, 08:39:56 pm »
Thank for the replies Phyl and Jim,

I have an appointment on Friday to see the ENT who is following my case here in Maine. Unfortunately, Dr. Noren retired back in June. The doctor I have now is highly respected, but does not have a lot of experience with radiated tumors as we don't have CK or GK up here. Plus,a s we all know, sometimes you can learn more from fellow patients than doctors.  ;)
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Lisa from Portland, Maine age 46
Diagnosed June 2006
15mm X 17mm AN right side 80% hearing loss
GK March 14,2007 Dr. Noren, Providence RI
1 Year follow-up MRI shows "slight shrinkage".
2 Year follow-up MRI shows "No Change".
3 Year follow-up MRI "stable".
BAHA surgery 4-22-09 BP100 Sept. 2009

ppearl214

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Re: Symptoms 5 years post GK
« Reply #4 on: October 29, 2011, 05:02:13 am »
wow!  I had no clue Dr. Noren retired. Good to know.  Well, if you decide to make the ride to metro Boston for a follow up, just let me/us know.... :)  Hang in there and pls remember, we aren't real doctors.  We only play non-doctors on forums!  >:D

Signed,
the other "Dr Phyl"
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"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"
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