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        New Message Board Archives >> 2004 Posts >> surgery
        
(Message started by: justin on Jun 16^th, 2004, 1:40pm)

Title: surgery
Post by justin on Jun 16^th, 2004, 1:40pm

my neuro was telling me about a surgery that is being done at the mayo clinic in arizona. anyone know anyone who has done it. i think it involves an electrode implanted in the brain's pain or nerve center.

Title: Re: surgery
Post by thomas on Jun 16^th, 2004, 2:10pm

I wouldn't think about it untill you've tried all of the meds we use and talk about here, including shrooms.

Title: Re: surgery
Post by Luke63 on Jun 16^th, 2004, 2:16pm

on 06/16/04 at 14:10:29, thomas wrote:

I wouldn't think about it untill you've tried all of the meds we use and talk about here, including shrooms.

I'm with you man!!! Explore all other avenues first justin!

Title: Re: surgery
Post by justin on Jun 16^th, 2004, 2:32pm

well i'm getting close to having tried everything. i'm just curious. i wouldn't do something like that will nilly. i would research everything first.

Title: Re: surgery
Post by Jeepgun on Jun 16^th, 2004, 2:33pm

Next time I get a Kip-8, I'm going to the kitchen and digging my right eye out with a tablespoon. Would you like to join me? ;;D

Title: Re: surgery
Post by thomas on Jun 16^th, 2004, 2:44pm

on 06/16/04 at 14:33:36, Jeepgun wrote:

Next time I get a Kip-8, I'm going to the kitchen and digging my right eye out with a tablespoon. Would you like to join me? ;;D

That would upset the women, not a good idea. ;;D

Title: Re: surgery
Post by Luke63 on Jun 16^th, 2004, 2:45pm

A Tablespoon????? WTF'S the matter with you Frank....use a chainsaw...it's much faster!!!

Title: Re: surgery
Post by Jeepgun on Jun 16^th, 2004, 3:00pm

To be honest, I've begun examining my table saw in a new light... :o Remember "Caddy Shack," and how crazed Bill Murray was, by the end of the movie, trying to kill the gopher? That's how I'm feeling lately, as I ponder ways of killing the cluster demon. So, someday, when my wife comes home and finds me sitting on the edge of the bed with a stick of dynamite in my mouth and starts to freak out, I can tell her, "It's okay! I'm a professional!" ;;D

Title: Re: surgery
Post by purpleydog on Jun 16^th, 2004, 6:20pm

Frank,
The tablespoon thing wouldn't work anyway, your eye would just grow back for the next assault. ;;D

purpleydog

Title: Re: surgery
Post by pubgirl on Jun 16^th, 2004, 8:26pm

Surgery is a bad idea. ALL the experts would ensure EVERYTHING else had been tried, and probably tried again before this route is ventured. Prof Goadsby himself has only recommended surgery on the most intractable chronic sufferers. Most of them have also been chronic for many years.

Do your research please Justin (there is quite a bit in the OUCH library and on the net and threads on here but here are the edited highlights):

Deep brain implant into hypothalamus. Highly dangerous and purely experimental in Italy.

ONSI- Occipital nerve stimulator implant (threads on this here). Non-invasive and therefore no more risk than any other surgical procedure. Limited success. Several people have had it recently and the results are not promising.

Gamma Knife surgery- (threads on this here) a very few short term successes.

Wendy

Title: Surgical Domain.....
Post by Mr. Happy on Jun 16^th, 2004, 10:34pm

{Piss off, Wendy.....}

on 06/16/04 at 13:40:44, justin wrote:

telling me about a surgery

There's the spirit......sort of like a CH Eminent Domain. Full speed ahead, and damn the consequences. There's nothing like facing a good challenge.......and a neato scar after the OP.
Not sure.......but the NECH Doc Volcy guy may be talking on electro-implant-techno-dweeb stuff at NashCon. Or not. You didn't hear it here first.

Got batteries?
RJ

Title: Re: surgery
Post by pubgirl on Jun 17^th, 2004, 2:08am

Mr Happy

Why are you telling me to piss off for trying to help by warning people that the deep brain implant and ONSI's aren't the Holy Grail currently for CH sufferers? [smiley=huh.gif]

There are three people in the UK who have had the ONSI recently (which some are hailing as the big breakthrough cluster surgery), and those three people are STILL chronic after having it done.
If someone at Nashcon is talking about it, these people will not have been reported on yet as it is very recent.

That now makes 4 UK ONSI's that I know of, and 4 people not relieved from their pain yet.

Wendy

Title: Re: surgery
Post by BarbaraD on Jun 17^th, 2004, 5:34am

I've had the StereoTactic Radio Frequency Trigeminal Rhisotomy (microwave the trigeminal nerve). Going in Dr. Hurt (in Houston) said it was an 80/20 chance and about the same odds that I could die. (I asked him what the downside of that last remark was - that's how bad I was) I lost the crap shoot and am still chronic with half my head numb.

For about a month I was almost pain free, but then back to square one. Still Chronic. Was it worth it? At the time my neuro told me I was out of options (and he was afraid I was going to do the suicide bit), but several months later we discovered Topamax and I went into remission (only breakthrus for several years). But then the topamax quit working and now I'm back to square one.

What I'm saying is -- no one can tell you what to do. And results are not guaranteed. My thoughts and prayers are with you.

Hugs BD

Title: Re: surgery
Post by gore2424 on Jun 18^th, 2004, 12:48am

I also had a right side trigeminal rhisotomy done only they cut hole into skull and went in and cut the trigeminal nerve which they can never sew it back done is done. I went to Mayo clinic in Rochester Minn to check on having a gamma knife thingy done after all else failed and I tried everthing legal and illegal. I have tried 67 different medicines in various combos which after 2-3 months stoped working. They would not do the gamma knife because very low good results. So I had a choice of having the rhisotomy done with a Dr D. Davis or contuining like I have which my wife and family and I all agreed I wouldnt couldnt go on much longer like I was. So the Dr. said he had done 6 before me and 4 were pain free for over 3 years and other two the clusters came back but with less force one even went to episodic. So I had it done and was in hospial for only 4 days BUT off work for 9 weeks. And in a little over 3 months I got the demon hammering back in my head. So here I am right side of face numb for rest of my life. The hardest part for me was learning to chew food again I keept biting my inside cheek and tongue. And always have to put eye drops in right eye to keep it lubed. Since Septmber 2002 I have had two eye infections last one took 2 months to heal. The eye Dr finally had to sew my right eye lid shut to heal completely. So my wife she (is a CNA very smart and reads everything she touches at home and work) and I just keept checking on other meds the Dr's and nuero's didnt try and now with current medicines I am able to not feel the pain full force. BUT the side effects of the medicines I was not able to work or even drive anymore. I got lucky and got 100% disability after first appeal. Doesnt pay what I used to make and I was in the auto parts selling business for over 20 years. But I dont have to worry about losing my job cause of all the time off I had to take. Guess what I am trying to say is check deep into any thing Dr's want to do to you. Read this message board completly. Look in webmd any site that has to do with pain or anything close you might find something new maybe. I choose to try the trigeminal rhisotomy was at the end and it didnt work but I am still alive. I am done rambling now. Terry

Title: Re: surgery
Post by cootie on Jun 18^th, 2004, 1:21am

OMG Terry.........your story gave me the willies..........what a nitemare you must of went thru with all that (you too Barabara)........you guys all deserve a metal for what you all go thru and have gone thru. My respect to the fullest Pam

Title: Re: surgery
Post by gore2424 on Jun 18^th, 2004, 11:21pm

Thank you Pam. I was at the end and tried the last thing we all could think of doing. Altho it didnt work with current meds I am on I now can still go thur life at pain level "4" 24/7 BUT still get them 10's thats when I can call my neuro and get a shot of 10 mg of morphine that helps me when I havent sleept for 2-4 days straight. I cant give it to myself but wife does since she is a CNA. And I only get one per month which has worked for me over a year now. Terry

Title: Re: surgery
Post by Renee on Jun 19^th, 2004, 8:47am

Terry,

so sorry to hear about your lack of finding something.

I am taking meds not relatively well known and finally, after 7 plus years of being chronic and living 24/7 with a kip 2-3, I only get hit once every few days.

My cocktail is odd for ch but it works and was prescribed by Dr. Sheftell at NECH. Have you taken these:

Zonegran 100mg at bedtime (side effect is just drowsiness in mornings of first month) as prevent
Indomethacin (100mg 2x daily with food) has not bothered my stomach
Flexeril at bedtime (muscle relaxer. keeps the knot in my neck to a minimal size which was caused by the ch but also causing more ch, or something like that)

I use Relpax as abortive as the trex quit working. Relpax only comes in pill form, which is a drawback, but once you take, about 20 min. later you are pain free and it lasts for 8-10 hours coverage for me and some others.

o2 quit working for me as well.

There are a few other chronics on this board that take zonegran and/or relpax. If interested in more info, pm me or make a post for others to reply to.

good luck and PLEASE check all things out before even considering a knife.

Renee

Title: Re: surgery
Post by bobkip on Jun 19^th, 2004, 11:45am

The only advice I will offer is DON'T. Don't be a lab rat for any irreverable surgery that has a dismal success rate.
Kip

Title: Re: surgery
Post by purpleydog on Jun 19^th, 2004, 2:10pm

on 06/19/04 at 11:45:15, bobkip wrote:

The only advice I will offer is DON'T. Don't be a lab rat for any irreverable surgery that has a dismal success rate.
Kip

purpleydog

Title: Re: surgery
Post by Gator on Jun 19^th, 2004, 4:02pm

What you are talking about is Hypothalamic Stimulation, also know as Deep Brain Stimulation.

It is in the early test phases, but looks promising for cluster headache that does not respond to medication. Early tests indicate that while the stimulation is applied, patients achive a completely pain free state that only goes away when the stimulation is removed. The good thing about this technique is that it is supposedly 100% reversible, although it is too new to judge any long term effects.

Use google to search for hypothalamic stimulation and you'll come up with about 56,000 entries on the topic. Do your research and make your own decision. I agree that I would never jump at any surgical technique before trying all the possible medicinal combinations first, but you are the only one who knows how much pain you personally are in. You are ultimately the person who has to make the final decision.

Gator

Title: Re: surgery
Post by hopefull on Jun 19^th, 2004, 4:14pm

We all get desperate now and then don't we.....be patient...think it thru....

Title: Re: surgery
Post by BarbaraD on Jun 20^th, 2004, 10:06am

Terry,

I'm laughing WITH you on the chewing thing. I still have a paralysis in my left jaw and (since my optic nerve got damaged in the surgery) eye problems also. Don't know if the surgery had anything to do with it, but had to have catarac surgery on both eyes about a year ago. But I see much better now, but still have to use the drops and hope nothing gets in the eye - cause I can't feel it.

Zonogram has some side effects also. NEuro put me on it and three months later I couldn't walk across the room because of vertigo. Went to my GP and he looked up the side effects - guess what -- VERTIGO was one of them. We went back on Topamax. But topamax has caused bad side effects in a lot of people -- I never experienced them, so you just can't tell till you try it.

Hope you find some relief soon.

Hugs BD

Title: Re: surgery
Post by mynm156 on Jun 20^th, 2004, 5:05pm

Dont know anything about the procedure dude but make SURE you have done every thing before U let some one poke around in your already messed up head. It would take much of an OPPS and ............GOOD VIBES BABY!!!!

MYNM156