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Cluster Headache Help and Support >> Medications, Treatments, Therapies >> Electrode implant...anyone had it?
(Message started by: phydeaux on Jan 19th, 2006, 11:48pm)

Title: Electrode implant...anyone had it?
Post by phydeaux on Jan 19th, 2006, 11:48pm
Since no meds are working for me, and O2 has no effect, my doc (Neil Raskin) is setting me up with the electrode implant (by setting up, I mean the first meeting with the neurosurgeon is in a few weeks to discuss it all). Anyone had it done, or know someone who had it done?

In all honesty, the idea scares the hell out of me. Sticking an electrode in yer brain?! Damn! I'll be getting a third opinion next week, when I travel down to UCLA.

Title: Re: Electrode implant...anyone had it?
Post by Mr. Happy on Jan 20th, 2006, 12:22am
It was the Italian's that did the first brain-stim's, if I remember correctly. (Sorry, no references/links come to mind.) Small test group........8 or so. It went something like 4 did great, 2 did mediocre, 1 failed miserably, and one bled out from the cranial surgery. Not sure what procedure you're considering.

Great that you can afford a third opinion. Let's hope 2 out of 3 agree, and you can make a well informed decision.

Explore all your options before you opt for an invasive procedure.
OptK?
RJ


Title: Re: Electrode implant...anyone had it?
Post by phydeaux on Jan 20th, 2006, 12:56am
The Italians have now had 29 successful procedures, and the doc at UCSF has done 5. Of those, 4 have 90% or better reduction in events.

I'm not sure exactly what I would be getting. My first appt with the neurosurgeon is in a few weeks, to discuss the whole thing...

Title: Re: Electrode implant...anyone had it?
Post by Mr. Happy on Jan 20th, 2006, 1:21am

on 01/20/06 at 00:56:58, phydeaux wrote:
I'm not sure exactly what I would be getting.

Might want to look into that first.
Mildly episodic here, once every 3 years. My vote don't count.

Do whatchu gotta do.
RJ


Title: Re: Electrode implant...anyone had it?
Post by E-Double on Jan 20th, 2006, 3:04am
I as many understand your desperation my friend.

Though we try to defne "pain" on a kip scale, daily suffering is subjective.

I'm almost 2 yrs chronic and I have ups and downs.

For the most part I kick ass through life because I have to, however many days I just wanto crawl inside a hole and not a fun one ;)

I've been through the mill on medication and I'm currently detoxing because I am just tired of it all.

I can't tell you what to try or not.

Just become as informed as you can!!

I do not think that I would ever go through surgery.
The risks to me far outweigh potential benefit.

My days are very much like you describe in your other thread regarding attacks yet O2 works for me 90% of the time.

Maybe some natural alternatives????
www.clusterbusters.com

I haven't gone there yet but close to going that route.

Title: Re: Electrode implant...anyone had it?
Post by phydeaux on Jan 20th, 2006, 1:15pm
Yeah, I got yer other post. I havn't had the 37minutes they say it takes to do the survey/form thing, but i will this weekend. Not sure about it, only from the standpoint that one of my wife's issues is that I've taken so many drugs, that I'm not the person she married.

Hard to argue with that.

And (in my youth, of course) having, eh-hem, "experimented" with some of those things on clusterbuster, I'll certainly be a different person, heh heh!

Still, anything is worth trying at least once, right?

And I'll tell ya, I understand the kick ass part. It really doesn't matter how much it hurts, I GOTTA get up every damn day, and make sure that there's money for house and car payments, kids toys, clothes, food, etc.,etc.,etc..
What I wouldn't give to be able to stay home when it's bad and forget the world exists.

And there's no doubt, the surgery is risky. But, the way I look at it is, are the risks worth the quality of life? Lets say there's a 50-50 chance of something going wrong (I'm pulling these numbers out of my butt for purposes of discussion here...) but a 95% chance that even if something goes wrong, the pain is 90% better. That's a chance I would take, just for the quality of life increase. Right now, I'd rather be a lobotomized pain free dude than a normal dude in god awfull pain.

Tough call either way though...

Title: Re: Electrode implant...anyone had it?
Post by E-Double on Jan 20th, 2006, 3:07pm
I read in your other post that you use oxygen with the "nose thingies" as you put it.

Those will be useless unless you put them in your mouth and inhale that way.

You need to have a NON-rebreather mask with a high flow regulator.

If by chance that it is your current doctor, the one suggesting surgery for you that gave you that set up, then I syggest that you find a new doctor altogether!!!!
This would suggest that he is not CH knowledgeable in the least!

Best to you,

Eric

Title: Re: Electrode implant...anyone had it?
Post by phydeaux on Jan 20th, 2006, 6:11pm
My doc is Raskin, who is near the top in the US for this. And he didn't specify waht mask to use. The regulator is a high flow one, and is capable of flow rates of up to 30 Liters per minute. Sounds like I need a better mask...

Title: Re: Electrode implant...anyone had it?
Post by unsolved1 on Jan 20th, 2006, 11:14pm
The 'electrode implant' you speak of is probably not the deep brain stimulator (DBS) but the Occipital nerve stimulator (ONSI). The ONSI is a fairly simple procedure with little complications.

I had an ONSI done in March of 04 but it didn't help at all.

UNsolved

Title: Re: Electrode implant...anyone had it?
Post by jacks920 on Jan 21st, 2006, 4:38pm
I'm getting ready to have the occipital stimulator done. If you want some good info about it, contact the Mayo Clinic in arizona. A Dr. Dodick. They will send you out a packet of info about all you need to know. 480-301-8100 or 480-301-8000, or look on the Mayo website for toll free number. Good Luck! Jacks

Title: Re: Electrode implant...anyone had it?
Post by phydeaux on Jan 21st, 2006, 8:58pm
I havn't met with the surgeon, so I don't know which one I'm looking at. The Neurologist told me that the implant is a big surgery, with a wire and some kind of activating device. But he also stated that removal is an outpatient thing.

I dunno...



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