I had gamma knife surgery for TLE in 2004

jeff1958

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When I had my gamma knife surgery done in 2004, I was the first person in WI to have it for temporal lobe epilepsy. As far as my neurosurgeon knows, I'm still the only one to have it that has other health problems like diabetes, 2 heart attacks, bypass surgery and a methicillin resistant staph infection. I wasn't a candidate for a temporal lobectomy because of my other health problems and I got in on a study program with the National Institute of Health. Finally after almost 2 years of waiting, I'm showing some results.
Instead of going into status epilepticus 2 to 4 times a month, I went 60 days last time and I'm counting the days now. I'm up to 25. I'm feeling very good about the possibility of making it longer this period.
I wish I could have had the standard surgery and found out faster if I had good results but with my health, I get what I'm dealt.
Has anyone else had gamma knife surgery for TLE? I'd like to know what you think of it. Thank-you Jeff
 

Bernard

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Hi Jeff, welcome to the forum! :hello:

I've been following your updates at Braintalk and the EFA for a while. I started another thread a while back on the gamma knife and you were the one who emailed me the info in the second post!

So far, I have not run across anyone else at any of the epilepsy forums that has tried the gamma knife.
 

jeff1958

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I saw my epileptologist two day ago. He congradulated me on the success so far in recent months. He then said that my MRIs look just like I had a temporal lobectomy. This is really exciting to me and hopefuly to others with TLE. Surgery without invasive methods. I have a chance of cancer in the future at some point. I was told that time is far in the future, decades.

For this NIH stuff they want me to keep track of everything going on so I have to check my blood sugars 4 or 5 times a day, record how I feel and any stress I'm under. I keep a log of everything. I hope they can learn something from me and the other 39 people picked for the study.

One day I saw my neurosurgeon and I told him I thought he was an incredably brave man doing his job. He stopped on the way to the examining room and said, " No Jeff, you are the bravest man I've ever met". I'm just going through what I have to. Thanks for reading this. Jeff
 

Bernard

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Great news Re: your MRI!

Someone has to be the first to test the waters or no one gets to swim. :)
 

AndrewWA

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Hello,

My name is Andrew, Im 24, been epileptic for 15 years.
I just recently was approved for a small study in Washington state called the ROSE study for epilepsy. Radiosurgery or Open Surgery for Epilepsy. Its a small study to see the benefits, if any, for Gamma-Knife surgery vs. Left Temporal Lobectomy. The study is accepting 18 people and randomizing them 50/50 into either side of the study, I am yet to know which I fall into.

Ive read a few postings on the left temporal surgeries, a few people saying they have had success, and a few saying they have not, in some cases worsening. I havent been able to find much on the Gamma Knife operation but the fact that it is non-invasive definitely sounds more appealing. And finding your post and seeing that you had it done in 2004 Jeff really makes it seem promising.

The purpose of this ROSE study is still to see if the FDA should the Gamma Knife surgery, so i was thinking in 2011 it still might be a new thing, but a 2004 operation has given "them" plenty of time to hon their skills I hope.

I'm going to start my testing here within the next month, just trying to find out whats up.
<3
 

branine

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I joined the Rose study in Nov 2011. Going for the WADA this week and then finding out which surgical procedure I will have. Would love to hear from anyone who has had the gamma knife.
 

AndrewWA

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Hey guys, thanks for responding.

So I went to Seattle and did my testing to see which side of this study i'd fall to. The computer randomized me for a temporal lobectomy, Im scheduled for Tuesday January 17. Its only supposed to be a 2 to 3 hour surgery but involves removal of the left hypocampus, the structure assigned for long term memory storage. The doctors seem extremely confident as my tests came back in perfect condition and I'm a young man in great health, as far as epileptics go.

I used the analogy removing the piece of brain was like taking 2 gigs of memory from a 30 gig hard drive, that only needed 10 total. Plenty of extra space. He said he liked it and would use that himself... lets hope its that easy :)

Thanks everyone,
<3
 

Nakamova

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Good luck with it -- please let us know how it goes.
 
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