Gamma Knife - Conflicting Opinions from Doctors

[ornette]

I was just diagnosed with AN (2.8 x2.6 x 1..

I've seen two doctors (1 ENT surgeon and one Neurosurgeon), and have done a decent amount of research.

There are conflicting opinions on the following topics:

-  Recomendability of Gamma Knife for a tumor my size.  The ENT surgeon says that my tumor is sufficiently large enough such that Gamma Knife general prognosis of 96% success would skew downward for me.   The Neurosurgeon says that my tumor is a perfect size for Gamma Knife

-  What happens is Gamma Knife doesn't work?   The ENT surgeon (and some literature I've encountered) says that if GN fails, subsequent surgery would be difficulty, risky, and include expectations of severe complications.  The Neurosurgeon says he's done 350 GN's for AN patients, and GN has failed 2 times.  In those cases, this doctor performed a second GN procedure, and tumor growth stopped. 

I would sincerely appreciate any experiences, information or opinions on how decode this puzzle.

Best Wishes to All,
Bruce

[Sefra22]

Hi Bruce,
Here is a site with a webcast of a surgeon who goes over all the options for AN, strongly endorsing GK. I found it interseting that he states that there is a myth that a tumor is harder to remove after radiation, because there is no way to know how difficult it would have been in the first place, as some are "stickier" than others.


www.acousticneuroma.neurosurgery.pitt.edu

Lisa

[kat]

Hi Bruce

I had GK here in UK Sheffield nearly 21 months ago for my 2.2 cm AN . Yesterday I got the result of my MRI scan and the
tumour is shrinking . I had very few symptoms before or after GK and since it appears  to have been successful I am very glad that I made that choice . I wish you good luck with making your choice .

Best regards Kat   

[ornette]

Thank you Lisa for the information.

That presentation from Pittsburgh was great.

I am heavily leaning towards Gamma Knife after a good deal more research.

The question in my mind now is how to decide where to have the procedure done.  My perception is that the skill of the surgeon is crucial to the overall success.

Does anybody have suggestions on where to go in the US?
Would it make sense to go to Pittsburgh, given that I live in San Diego?

Thanks again and best of luck to everyone.

Bruce

[marystro]

Hi Bruce,

There is a great GK center in San Diego.  USCD's Dr. Harris is very familiar with it.  I almost went to the GK route with Dr. Harris until I found out about Cyberknife.  Since you live in San Diego, have you also considered Cyberknife as your treatment choice?  There is now a San Diego Cyberknife Center in Kearny Mesa area if you are not aware of it.

My tumor was diagnosed last summer but I opted to go with Cyberknife at Stanford since the San Diego CK Center was too new then (it was opened last June).  However since then they have treated hundreds of patients of various tumors.  During our AN forum get together in San Diego earlier this month, we met Dr. Fuller from the San Diego CK Center who provided lots of insightful information.

If you have decided on GK, you may want to check out CK which provides similar result but without headframe.  There is a CK board where doctors will answer your questions if you have not already found out about them.  They helped me with my decision and I am doing great so far!  I am ready for my 6 month follow up next month.  How time flies!!

Below is the link to the CK board:
http://www.cyberknifesupport.org/forum/

Good luck in your treatment decision.  As many of us found out that the treatment decision process was the most difficult part.  No matter what decision you make, we are all here for you.  This is a great forum and everyone is so helpful.  Please do let me know if there is anything I can do to help you as I also live in San Diego.

Mary

[michael]

I would highly recommend speaking specifically with a GK radiation Oncologist. It believe it the same as in Lance Armstrong's book where he wrote that he had to go to each specialist to get thier particular take on the treatments and outcomes and then make his own decision. It does appear that GK is getting much better recognition amoung surgeons now than it did even two years ago. I spoke to staff at Yale and was told that they saw no need for me to travel when it was available to me closer to home. I recieved "Excellent" treatment at Bowman Grey (Wake Forest University) Hospital and believe that with the technology you just need the person that dots all the i's and crosses all the t's. All GK hospitals should be impeccably trained and offer very similar outcomes (always check). Remember that it is no longer just the steadyness of a surgeon's hand or if they are having a "good day or bad day". Technology is pushing us to a new era of health care that can be much more precise.
I think you are doing the very best thing anyone can do and that is ASK QUESTIONS! One of the best comments I every recieved was from an ENT I spoke with and he reminded me that I am the captain of my ship, he is the navigator. I must tell him where I want to go and he will tell me how to get there. Never turn over command without all the information, then, faith and trust can take over.
Best of luck,

Michael

[ppearl214]

In follow up to michael's comments, Cyberknife is on the heels of GammaKnife as well. Both have excellent track records (yes, GK longer than CK, but even for CK data, excellent results).  Both are highly accurate in target and both have proven track records in the treatment of AN's.  If one is to research radio-surgery, please make sure all options are reviewed, discussed with dr's etc, so you can make the best, informed decision for your situation that you can.

Just my thoughts.
Phyl

[rambler]

By now you have probably already made your decision as to where to go but I can add that I had an absolutely terrific experience with the Gamma Knife procedure through the House Clinic in Los Angeles with the procedure done at Good Samaritan Hospital.  They have performed well over 2000 procedures at Good Sam, according to their literature.  The team was terrific.  As another post indicated, an radiooncologist is recommended and is part of the standard team here.  With the recommendation of the hospital in San Diego it looks like you have a good local option. For anyone else consulting this board, there are some very good places in the Western US to have this procedure performed.