ANA Discussion Forum
Archive => Archives => Topic started by: john twoffer on August 07, 2006, 12:04:49 pm
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My general health is too poor to undergo open brain surgery. I had fractionated stereotactic radiosurgery in 2000 over 5 days at Johns Hopkins. The dose was 5 Gy x 5 days, for a total of 25 Gy, for my 5 mm x 7 mm x 9 mm tumor. The FSR seemed to kill the tumor for a while and all symptoms went away, but then it started growing again. It's now 1.1 x 1.5 cm in 2006.
John's Hopkins did FSR twice on an AN and killed the facial nerve.
San Diego Gamma Knife (Dr. Ott) has repeated GK up to 3 times on the same patient without damaging the facial nerve, and with control of the tumor. Altogether I think San Diego has done GK twice or more times on up to 3 patients, without facial nerve injury.
I need more information than just these 4 cases!
Has anyone had FSR followed by GK? Or anyone other form of radiation for AN twice?
Please help. I have already posted on the Cyberknife board without any known cases coming up.
John
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Hi John,
I have seen your posts on the CK board. Sorry, you are having a hard time getting information. Wanted to suggest the Acoustic Neuroma Patient Archive. Haven't checked it out in a while but maybe you'll get lucky? www.anarchive.org
Good Luck!
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Thanks for telling me about Dr. Steiner. That's a great lead! I will talk to him about having done GK twice. At least that's a start!
John
Hi, John. Sorry you haven't had much luck getting an answer to your question. My husband had GK at the Universtiy of Virginia in May. When we talked with Dr. Steiner there, who was involved in the invention of the GK and has more than 30 years of experience with it, he did tell us he had done some GK treatments twice, but I don't know how many repeats he did and I don't know what the results were. That wasn't our concern at the time, so we didn't discuss it much. But he does do free phone consults, so you might want to consider contacting the GK center there and asking him what he thinks. From our experience, he will give you an honest answer, and there was no pressure to seek treatment following the phone consult. I'm sure there are other radiosurgery centers that would be happy to give you their opinion based on their experience, too. Sorry I can't offer a personal experience, but I hope you find answers to your questions.
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Hey John,
I sort of reasked your question again on the CK board, you might want to check out the response about Dr. Steiner at UVA. The thread is by Raydean and it is titled "the maximum about of radiation you can receive in a lifetime".
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Dr. Steiner has apparently done GK twice in many patients. He has done 2000 cases over 10 years. 83% good result. So some of them he has done twice and even some 3 times. I must confess that I am confused about the exact number and will have to go see him and pin him down. My best to all.
Hey John,
I sort of reasked your question again on the CK board, you might want to check out the response about Dr. Steiner at UVA.  The thread is by Raydean and it is titled "the maximum about of radiation you can receive in a lifetime".