Author Topic: Help! Need to find the BEST Gamma Knife treatment!  (Read 4462 times)

swhite

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Help! Need to find the BEST Gamma Knife treatment!
« on: July 15, 2014, 12:16:02 pm »
I have not posted here in several years.  I'm 5 years post-op after a hemorraging AN took me to ER (didn't know I had it - 4.3cm)!  I've had a remarkable recovery, but was unfortunately told this morning that I need Gamma Knife as my residual AN has grown from 2.0x2.3x1.5 a year ago to now 2.5x2.5x1.8 :(
I live in Michigan and have had House Clinic review my MRI's ever since my initial surgery (sending these results overnight to him tonight).  I'm okay with proceeding with Gamma Knife, but I've been encouraged to do it soon (in a month or so!).  This doesn't leave me much time!  I'm sure there are other surgeon/facilities in the Midwest/East that have great success rates.  I want the BEST!  I'm only 52, very active, believe in my faith and have a very supportive family.  God Bless those that have a minute to give me their thoughts. :)
Retrosigmoid 8/27/09 undiagnosed and suddenly; no symptoms prior; approx. 4cmx2cmx2cm; right-side, facial paralysis/weakness, SSD and tinnitus. Baha surgery 11/9/10.
Gamma Knife 8/11/14 at UPMC w/Dr. Lunsford after regrowth detected June 2014

Kat From Indiana

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Re: Help! Need to find the BEST Gamma Knife treatment!
« Reply #1 on: July 15, 2014, 02:38:03 pm »
I live in Central Indiana and after researching, I chose to go to Dr. Lunsford in Pittsburgh.  I was very pleased with my decision.  We have a good staff here at IU in Indianapolis, but in the end I went with experience.  I like that Dr. L. studied with the person who actually invented the Gamma Knife. (Considering this, I expected him to be old, but he is not.  Of course I am comparing him to myself and I am mid 50's.  LOL)  I am guessing that Pittsburgh may treat more Acoustic Neuroma patients in a week, than IU does in a year.  (don't quote me on that please).  Anyway, I got an appointment right away, with no wait! 
Diagnosed 3/29/14 Right Side AN 8mm x 3mm x 4mm
GK UPMC 6/13/14
MRI 12/03/2014

cathyroe

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Re: Help! Need to find the BEST Gamma Knife treatment!
« Reply #2 on: July 22, 2014, 05:33:04 am »
I life in Michigan, and since I have great insurance I can choose the best. I , like Kat, researched the heck out of this and chose Dr. Lunsford in Pittsburgh ,UPMC . He's the best as far as reputation and experience and has a great track record for outcome. Good luck!
11/02/12  Diagnosed with AN  11mm X 5mm
05/29/13  MRI reports no change, stable
11/20/13  MRI reports 13mm X 7mm X5mm
5/20/14 MRI reports 14mm x 8 mm x 6 mm
7/29/14 GK at UPMC Lunsford. Now a Postie Toastie
1/14/15 Six Month MRI growth. 16mm X 8 mm
11/09/15  16 mm X 9 mm
9/15/16   17 mm x 11 mm x 8

robinb

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Re: Help! Need to find the BEST Gamma Knife treatment!
« Reply #3 on: July 22, 2014, 07:59:13 pm »
I live in California and like Cathy went to Dr. Lunsford at UPMC.
AN Diagnosed 11-2012 right side
13mm x 7.2 mm
Gamma Knife 1/24/13
UPMC w/Dr. Lunsford
Officially a postie toastie!
See my treatment journal at: http://www.anausa.org/smf/index.php?topic=18291.0

swhite

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Re: Help! Need to find the BEST Gamma Knife treatment!
« Reply #4 on: July 27, 2014, 05:45:32 am »
Thank you for your input.
I made the decision for GK w/Dr. Lunsford August 11th.  He got me pretty quickly!  It can't get here soon enough and I'm very nervous as my symptoms are consuming me :(  My face and head hurt and can't help to think this dumb AN is growing and swelling as we speak :(
After an emergency retro-sigmoid surgery five years ago, it never crossed my mind to have surgery again, but some doctors the last week have brought this to my attention causing me to second guess my decision :(
I really am a positive person and have remarkable recovery the last five years.  My ENT here at home suggested going on Neurontin and I'm now considering this just to get me through the next two weeks.  Appreciate any thoughts.
Retrosigmoid 8/27/09 undiagnosed and suddenly; no symptoms prior; approx. 4cmx2cmx2cm; right-side, facial paralysis/weakness, SSD and tinnitus. Baha surgery 11/9/10.
Gamma Knife 8/11/14 at UPMC w/Dr. Lunsford after regrowth detected June 2014

CHD63

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Re: Help! Need to find the BEST Gamma Knife treatment!
« Reply #5 on: July 27, 2014, 06:43:38 am »
I really do not mean to muddy the waters here ..... but for what it is worth, my tumor regrew following my first surgery via retrosigmoid approach.  Therefore, it was surgically removed a second time three years later via translab approach.  I recovered far more quickly from the second surgery than the first one (I was walking around downtown LA 9 days post-op.), mainly due to the fact my vestibular nerve had already been severed during the first surgery so I did not have to relearn how to walk again.

In my case, I was not a candidate for radiation treatment of the regrowth because of massive radium treatments to my head when I was a teenager.

Many thoughts and prayers for the best treatment and peace for you that you have made the best decision.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011