Curious...GK and CK data statistics

[Nancy Drew]

I was just thinking about this today, and I thought I'd check it out with all of you GKers and CKers to see if you can answer this question.

I asked my doctor about GK stats, and he said he uses the stats coming out of Pittsburgh.  The facility where I had my GK opened in 2004, and my doctor said there is not enough data yet to give long term results.  For those of you who had GK at Pittsburgh, are you being tracked by Pittsburgh?  Also, the same questions for those who got CK at Stanford?  I am just wondering how data is being generated?

Nancy

[sgerrard]

When people say Pittsburgh and GK in the same sentence, they are usually talking about the work of Douglas Kondziolka, et. al., particularly the reports that came out in 1997. Here is a link to the web site, with lots of info and background: http://www.acousticneuroma.neurosurgery.pitt.edu/index.html

It is interesting that many of the results were published 10 years ago, and include results for at least 162 patients who were treated 10-15 years earlier at the time of the study - 20-25 years ago now. If they don't yet qualify as long term studies in the minds of some, they should at least count as pretty long term studies. 

Stanford has been doing the same with CK since 1999 or so, and has published their results several times - I think 2005 was the last time. The studies are usually done at larger universities, where they have professors who publish, and a large enough hospital to handle a good number of patients. They want me to either come to Stanford for follow up MRIs and hearing tests, or to send them results if I have them done here in Portland. I think most patients are happy to do so, although I'm sure the response drops off the further out from treatment the patients get.

Steve

[Nancy Drew]

Hi Steve,

Thanks for the web site.  I have it saved to read when I have more time.  You are a wealth of information.  At my next visit, I am going to ask my doctor if he collects data, and if he does, what is he doing with it.  It would seem to me that it would be a good idea if the folks who invented GK and CK ask the doctors who use these machines to send them info so they can get really accurate data (gosh, is that a run on sentence or what? I don't feel like correcting!)   Maybe some docs don't want to fool with it, I suppose.  I would certainly like my results to be recorded somewhere so they can be of use.  I think this radiation stuff is fascinating........like something you see on Star Trek.  Thanks for the info.

Nancy