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Topic: Surgery (Read 403 times) |
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hm54
New Board Newbie
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7 or 8 years before Imitrex went on the market my Ch's became unimaginable. I had 10's everyday for two weeks that kept getting worse. The final weekend, four Er's cut me off (too much junk), and the paramedics told my wife they could not respond again. The first trip I requested but my wife couldn't get me in the car. The 2nd trip she requested. The 3rd trip found me in the snow, in my underwear, passed out cold Apparently, I very calmly thanked the paramdics, and told them to leave me alone, I was dead. The 4th and final trip I didn't know about until the next day. My neuro had had me admitted and put on a morphine drip. Talk about your K 9.5 s and K 10's. Anyway, we went experimental (at that time) and found a surgeon willing to try a Radiofrequency Trigeminal Neuralgia for Cluster Headache. (it had been done a few times in Houston and Chicago) In any case, it seemed to be a relatively simple procedure during which the surgeon puts you under, and inserts an eledrode through the roof of your mouth to the base of your brain. Once there, you are brought out of it to assist. The surgeon moves the electrode around, shocking you until you feel the shock where you feel the pain during a CH. The nerves in that area are then destroyed. Supposedly, in my case, the surgeon wanted to do three lesions but was only able to do two because I went ballistic during the procedure and they had to stop. The surgeon called it a failure because he didn't get all the areas he wanted to. However, I went five years totally pain free. I still had the HA's, had all the symptoms, knew exactly when I was having an attack, I just didn't hurt. After 5 years, the nerves grew back (it was expected) but it was a glorious 5 years.
After suffering for another year and ahalf or so, the beast became unmanagable again and the same surgeon tried again, but failed completely. A second surgeon tried and failed(There is a canal leading from the roof of the mouth to the base of the brain. That canal had closed up and they couldn't get the electrode in) However, for some reason, I went into another remission for 2 -2 1/2 years before we started dancing again. (It's theorized that the trauma of the failed attempts had some unexplicable effect). By that time, Imitrex had hit the shelves.
After thirty years, the adventure continues. I don't remember ever being in an ambulance and I don't remember the surgeries themselves. I only remember the look on my neuro's face the first time I saw him after the surgery.
I hope this post helps someone, shows an alternative. I just realized I've never talked about that part of my life.
Tears roll down. Thanks to all
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pattik
CH.com Alumnus
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Re: Surgery
« Reply #1 on: Sep 4th, 2005, 5:59pm » |
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hwm, you're very brave to allow "experimental" brain surgery on yourself, not once, but several times! I'm glad you found some relief as a result, but NOBODY is sticking things near my brain until its a PROVEN and lasting cure. Sounds as if you had a really rough time of it. Hope you are PF now.
patti
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The voyage of discovery is not about seeking new landscapes, it's about having new eyes--Marcel Proust
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andrewhurt
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Re: Surgery
« Reply #2 on: Oct 11th, 2005, 12:55pm » |
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radiofrequency trigeminal rhizotomy is not experimental. it was initially developed for the treatment of trigeminal neuralgia in the 70s by Dr. William Sweet in Boston (you can do a pubmed search for "migrainous neuralgia", as it was called back then). the effectiveness of the procedure is better documented for trigeminal neuralgia, being the more prevalent disease, but there have been a number of clinical studies on its effectiveness for ch. there are links to a few of these studies at www.neurohurt.com/resources.htm (there will be more to come...i'm just getting started with this web design stuff). anyway, i'm glad to hear it brought you some relief, though temporarily. is the imitrex now sufficient to bring the HA's under control?
-afh
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Jeepgun
CH.com Alumnus
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BOHICA!!!
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Re: Surgery
« Reply #3 on: Oct 11th, 2005, 2:03pm » |
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There was a guy around here, some weeks ago, beating the drum for surgery... Other sufferers of CH have had brain surgery with no improvement in their condition. I have to side with Patti on this one: No one's touching my pain-charred brain until they can give me some better odds.
If it helped you, then congratulations. I'm very happy for your success and freedom from pain.
-Frank
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Her: "Have you ever hit a deer?"
Me: "What, like, in the FACE?"
Her: ..... "WHAT is the MATTER with you!?"
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CHTom
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I had Deep Brain Stimultion (DBS) surgery 5 weeks ago; my pain has dramatically decreased from several 10's per day, every day, to 2 days a week of 10 pain and the rest of the week virtually pain free (and the 10's will decrease over the next few months). I have suffered from chronic CH since 1996 and this surgery was a godsend to me. My health insurance company is trying to get out of paying for it, but that is another story. For me, it was either the surgery or a bullet and I am glad that I chose the former. Please PM me if you want further information.
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vig
CH.com Alumnus
New Board Hall of Famer
CHit Happens
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Re: Surgery
« Reply #5 on: Oct 11th, 2005, 8:40pm » |
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or you can try the indole alternatives
cheaper and anecdotally more effective
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never, Never, NEVER quit. -Winston Churchill
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Sean_C
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on Oct 11th, 2005, 12:55pm, andrewhurt wrote:radiofrequency trigeminal rhizotomy is not experimental. it was initially developed for the treatment of trigeminal neuralgia in the 70s by Dr. William Sweet in Boston (you can do a pubmed search for "migrainous neuralgia", as it was called back then). the effectiveness of the procedure is better documented for trigeminal neuralgia, being the more prevalent disease, but there have been a number of clinical studies on its effectiveness for ch. there are links to a few of these studies at www.neurohurt.com/resources.htm (there will be more to come...i'm just getting started with this web design stuff). anyway, i'm glad to hear it brought you some relief, though temporarily. is the imitrex now sufficient to bring the HA's under control?
-afh |
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I love this guy already
Welcome aboard Andrew
Sean....................................
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unsolved1
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on Oct 11th, 2005, 8:36pm, CHTom wrote:| I had Deep Brain Stimultion (DBS) surgery 5 weeks ago; . |
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Why don't you start a thread and tell everybody about it. Where did you have it done? By whom? What was it like? etc.
UNsolved 
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