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Topic: Gamma Knife (Read 385 times) |
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Peppermint
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Gamma Knife
« on: Apr 23rd, 2003, 8:37am » |
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Hi, 
A friend of mine is working diligently on getting this surgery, as he has high hopes that it will give him permanent relief. I don't blame him for wanting this, as he's tried many many things to help his chronic CH lay off for a much needed period of relief.
I've looked through the archives for information and experiences with this surgery, just to get some idea about it. There is some info there but I'm wondering if there are any more RECENT experiences with the outcomes of this type of procedure, since most of those posts are quite old and not very specific.
A search is ok for scientific facts and such but it would be good to get some more personal feedback.
How did you feel afterwards, did it work?? Did you experience negative side effects...etc.
I'm just really concerned about my friend here - I'd really appreciate your feedback.
Peppi 
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forgetfulnot
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Been there, tried to do that. My insurance co. denied the surgery as it was experimental. This was about 3 years ago. I have read since then that many people have severe side effects going this route. Not long ago someone reported a new technique at a Mayo clinic in New Mexico involving a nerve stimulating implant device that cleared the C/H in at least one patient. That would be worth a look before going ahead with the irreversible Gamma Knife procedure.
Lee
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Margi
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Re: Gamma Knife
« Reply #2 on: Apr 23rd, 2003, 10:29am » |
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Hey, Lee - good to see you posting!
That Gamma surgery is scary. Not only does it paralyze muscles forever, but what's to say that once you get one side done that the clusters won't come back on the other side? Losing the ability to blink and smile on one side without the guarantee of further cluster prevention is a pretty huge risk to take, in my books.
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Peppermint
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Re: Gamma Knife
« Reply #3 on: Apr 23rd, 2003, 10:58am » |
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Thanks Lee - Margi I agree.
Lee, what's the name of the device you're talking about?
I Am VERY concerned for him about the results, especially that there is no guarantee of getting rid of the clusters.  He's been at his rope's end quite a few times, which is why I think he's got his mind set on this.
I can understand why the insurance company was saying no, but now, it looks like he's on the track he wanted, and time is of the essence.
I'd like to convince him to wait, try some other treatment, ANY other treatment. He's had a long list of failures, few and limited successes and his Verap Lithium combo has finally stopped working. It looks like in his eyes, the chance that it can finally stop is worth the risk. I think the odds are against it, otherwise, I'd probably have seen a hell of a lot more recent, positive posts in regards to the surgery.
ANY one hear of recent successes or improvements on this procedure?
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You like apples? How ya like them apples?
When playing in the gym, beware of steel beams. - M. Amyx
Carve your name on hearts, and not on marble. - Charles H. Spurgeon
FYI - I am NOT a clusterhead.
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forgetfulnot
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Hi Peppermint, my memory ain't very good anymore but this is what I recall. Mayo Clinic, not New Mexico but Scottsdale, Az. I think  This was an implant in the back of the neck that was attached to a nerve that amazingly did away with this guy's chronic clusters on both sides. Try calling the main Mayo clinic or in Scottsdale, someone in the neuro dept. should know all about this deal. Else do a search on ch.com "implant" I usually don't get many hits on this engine.
I know when your at the end of your rope Gamma Knife looks pretty good, from what I hear if this deal is off 1/1000 of an inch you could become damaged for life and still have chronic clusters and may not be able to tell anyone  kinda scarry 
Lee
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Peppermint
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Re: Gamma Knife
« Reply #6 on: Apr 23rd, 2003, 5:42pm » |
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Thank you so much Lee. We'll look into this, its a matter of quality of life.... Ch is bad enough , but considering what may result in the alternatives....It CAN be worse. 
I know he's probably out there reading this - if you ARE, PLEASE!! reconsider.
Pep
Edit:
Gee Marc, didn't see your post last time around! Thanks so much, I have a lot of reading to do.
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| « Last Edit: Apr 24th, 2003, 12:11am by Peppermint » |
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You like apples? How ya like them apples?
When playing in the gym, beware of steel beams. - M. Amyx
Carve your name on hearts, and not on marble. - Charles H. Spurgeon
FYI - I am NOT a clusterhead.
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forgetfulnot
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Mark C., thanks for the links, very good stuf.
Lee
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hdbngr
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Re: Gamma Knife
« Reply #8 on: May 9th, 2003, 9:06am » |
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There are a few chronics, the ones who haven't found a magic pill, imitrex doesn't work, and while the O2 helps the pain, it doesn't abort it, who would sign up immediately. It is a scary thing to get hit and know there is NOTHING that you can do to stop it. I think it is easy to say "the risks are too high" when you have a magic pill, or can puff on an O2 mask for relief. For those who have no relief, it seems less like risk and more like hope. I think one of the most important things is to do your homework before any procedure. The second most important thing is to have the love and support of your friends and family, even if they are scared for you.
I think there are only five "approved" clinics for the Gamma Knife procedure in the US. One is at Yale. Is his clinic approved? The biggest problem is the pain may switch sides. Have heard they could always do the other side if this happened. I never heard about paralysis or not being able to smile/blink, I think that is when they CUT the nerves, not Gamma Knife. There is no real "knife" in this procedure.
The Gamma Knife is an outpatient procedure, takes about 45 minutes. They place your head in a steel frame with screws that go into the forehead (lidocaine to kill the pain). This frame is to hold you perfectly still in the procedure and eliminate the risk that they would be "off". It leaves no permannent marks, just four scabs where the screws were. They take a scan right before to use as a map. They place a small lesion on the selected nerve with their giant ray gun and then the patient has to wait six weeks for it to damage the nerve impulses. Hopefully, in 6 weeks, the pain is gone.
If he has tried everything else (medications, RFG's, blocks, therapy) and this procedure still makes you nervous, you might ask about the spinal chord stimulator or occipital implant (mentioned first by Lee). Some cluster patients are getting relief from these. There is a "trial" implant they can hook you up to and see if it will work prior to the actual surgery. The implants have been around for more than 20 years, but it has only been in the last 5 years they have started treating head pain with them. They are nice because you can control the level of pain relief you need, depending on how bad an atack is. It's not a "one size fits all". One of the makers of the implant, Medtronic, has a web site if you want to look, see if there are Docs in your area. I'm looking for answers too, and I'm hoping this works for me.
In the meantime, the support and understanding of your friends can mean so much, especially if you are at the end of your rope.
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