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        New Message Board Archives >> Oct-Dec 2003 >> Gamma Knife !
        
(Message started by: Elaine on Oct 31^st, 2003, 8:07pm)

Title: Gamma Knife !
Post by Elaine on Oct 31^st, 2003, 8:07pm

Would people who have done this or know about this please post! I had a man write me that is thinking of doing this. I know he reads the board and would like for him to hear what you guys have to say about it. Since I have not done it I would reather him get you guys opinion. Mine is DON'T DO IT!

Title: Re: Gamma Knife !
Post by Svenn on Oct 31^st, 2003, 8:29pm

Hi Elaine

Have a buddy here in Norway that did the gammathing.
He got a lot worse after that
So my advice is the same as you says

DONT DO IT.THERE IS NO GUARANTEES THE ODDS ARE TO BAD

Please tell your friend DONT DO IT

Svenn

Title: Re: Gamma Knife !
Post by nancyc on Oct 31^st, 2003, 8:35pm

NO way is any knife coming near me...there has to be better options than that...I would try anything first...have heard of folks that have done it and had no relief afterwards...so it was done for nothing... :Dnancyc

Title: Re: Gamma Knife !
Post by Unsolved on Nov 1^st, 2003, 1:15am

No Gamma Knife here .... just a little bit uh Radio Frequency [smiley=laugh.gif]

Title: Re: Gamma Knife !
Post by MarkHW on Nov 1^st, 2003, 9:02am

I seriously looked into the gamma knife... NO WAY.
It isn't reliable and it can leave you with serious facial paralysis.

Try to find somewhere doing the occiptial nerve block or try Clomid (I've been on it for 4 weeks - cluster free)... see post on med board or main board.

Mark

Title: Re: Gamma Knife !
Post by BarbaraD on Nov 1^st, 2003, 1:31pm

Did the Radio Frequency thing -- But the gamma knife was too risky. In the archives are posts about it. Not any that I can remember were successful.

BD

Title: Re: Gamma Knife !
Post by kissmyglass on Nov 1^st, 2003, 10:55pm

I have a good friend who is a neurosurgeon. He said he would not do Gamma Knife on me or anyone in his family.
Good Luck!

Kev

Title: Re: Gamma Knife !
Post by BarbaraD on Nov 2^nd, 2003, 10:17am

Below is what I found in the archives on Gamma Knife surgery... From further posts Lee didn't have the surgery because his insurance wouldn't pay for it. You might go to the archives and read all there is about it.

Seems they use Radiation to severe the nerve (not a real knife). Doesn't seem to work real well on CH.

There's a thread on it in the archives. Not really much help, but all I could find.
BD

gamma knife surgery

Posted by Leee M. on September 23, 1998 at 20:31:19:
Well folks, drugs just don't work for me any longer,
so I am going under the Gamma Knive Oct. 14, stay
tuned for results, this can take from two weeks to
six months to have any effect. Wish me luck and good
luck in your pursuit to calm this devil.

Title: Re: Gamma Knife !
Post by forgetfulnot on Nov 2^nd, 2003, 10:12pm

[J. Hall, a guy named Harty posted this reciently.

Quote:AFTER23 YEARS I have found total relief! With the exception of one five month hiatus i have had cluster headaches every day for 23 years.The last six months of my suffering was the worst;5 or 6 a day of the absolute worst intensity . I could not walk,sometimes could not see and could not for the life of me refrain from loud groaning. Needless to say having one around others or the general public was a nightmare.
Ive seen well over 50 doctors and have used every medication mentioned more than once on this website.
I had some reduction in frequency( one a day) with Sansert but otherwise none. Finally convincing my neurologist that I was truly at the end of my rope he told me about gamma knife surgery and referred me to a neurosurgeon.They both decided I was a good candidate and set up the surgery. Both doctors told me relief would take up to 6 months.The surgery itself was a breeze. The only thing you have to endure is one IV insertion.You wont remember anything else at all.
The following 2 weeks I had 2 headaches each week;down from 6 a day. I am now 3 months post surgery and havent had one in almost 4 weeks.It really worked!
You will need to have good insurance as the total billings for the procedure were about $50,000. My total cost was about $1,000. and well worth it.
If anyone would like to discuss this a bit further Email me and we can arrange a phone call if you like. Lee,
My Email address is hart4083@bellsouth.net
I am 53 , had CH since age 29,live in atlanta now,originally from Annapolis MD., work in Insurance industry. If you,ve ever read the profile for ch sufferers it's me...6ft 3, slender, brown hair ,green eyes,responsible job,smoker,social drinker.

Had the procedure done at Piedmont Hospital in Atlanta. Only 2 surgeons with this experience in Atlanta.
I had heard about the possible paralysis and speech side effects about 6 years ago but multiple doctors told me they have perfected the targeting of theeffected area so much that these complications are no longer a problem. Only side effect now is some very small and minor numbess. I had about a one inch diameter spot of numbness on top of my head but that'
s no bother at all. Currently that is the only known complication.

I certainly did not mean that everyone should not run out and get this done right away and I know 3 months is no gauge for total success but my results were so drastic that I could not wait to tell others that there is a procedure that worked for what several doctors have described to be the most hopeless case of CH they've seen. Most doctors wont consider the surgery until they've exhausted all other non-invasive remedies.
If you'd like to know more just write.

Quote:

"Lee,
My Email address is hart4083@bellsouth.net
I am 53 , had CH since age 29,live in atlanta now,originally from Annapolis MD., work in Insurance industry. If you,ve ever read the profile for ch sufferers it's me...6ft 3, slender, brown hair ,green eyes,responsible job,smoker,social drinker.

Had the procedure done at Piedmont Hospital in Atlanta. Only 2 surgeons with this experience in Atlanta.
I had heard about the possible paralysis and speech side effects about 6 years ago but multiple doctors told me they have perfected the targeting of theeffected area so much that these complications are no longer a problem. Only side effect now is some very small and minor numbess. I had about a one inch diameter spot of numbness on top of my head but that'
s no bother at all. Currently that is the only known complication.

I certainly did not mean that everyone should not run out and get this done right away and I know 3 months is no gauge for total success but my results were so drastic that I could not wait to tell others that there is a procedure that worked for what several doctors have described to be the most hopeless case of CH they've seen. Most doctors wont consider the surgery until they've exhausted all other non-invasive remedies.
If you'd like to know more just write. "

Lee

Title: Re: Gamma Knife !
Post by BarbaraD on Nov 3^rd, 2003, 6:45am

Lee,
Glad you found relief. This is GOOD news.

Looked for other posts from you, but I guess I missed them. Old eyes aren't what they used to be......

BD

Title: Re: Gamma Knife !
Post by brain_cramps on Nov 3^rd, 2003, 7:13am

on 11/02/03 at 22:12:37, forgetfulnot wrote:

[J. Hall, a guy named Harty posted this reciently.

Quote:AFTER23 YEARS I have found total relief!...

on 11/02/03 at 22:12:37, forgetfulnot wrote:

...Quote:

Start of Quote
"Lee,
My Email address is hart4083@bellsouth.net
I am 53 , had CH since age 29,...

on 11/02/03 at 22:12:37, forgetfulnot wrote:

...Most doctors wont consider the surgery until they've exhausted all other non-invasive remedies.
If you'd like to know more just write. "
End of Quote

Lee

on 11/03/03 at 06:45:58, BarbaraD wrote:

Lee,
Glad you found relief. This is GOOD news.

Barbara:

I don't think Lee was saying that he had the procedure himself. Instead, I think it was "a guy named Harty" that Lee was quoting.

Correct me if I'm wrong, Lee.

grant

Title: Re: Gamma Knife !
Post by forgetfulnot on Nov 3^rd, 2003, 12:37pm

Hi Grant, you are correct. The funny thing about this is that Harty and J. Hall are both from Atlanta and both fairly new members, coincidence?

[smiley=duh.gif]

Lee ;;D

Title: Re: Gamma Knife !
Post by BobG on Nov 3^rd, 2003, 1:10pm

From the archives......cuttin' and other stuff

http://www.clusterheadaches.com/wwwboard/messages/100398.html
Margi (7-12-01) list of posts about NOT having surgery

http://www.allsands.com/Misc1/gammakniferadi_uux_gn.htm
describes Gamma Knife Radiosurgery

http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=general;action=display;num=1021467132
string started by erik May 15, 2002 “tri nerve cut anybody here?”
scroll down to Barbara D’s reply to erik, don’t do it!

http://www.neurosurgery.ufl.edu/ClinSpec/trigeminal.html
Microvascular decompression (Janetta procedure) surgery for Trigeminal Neuralgia

http://drjho.com/id68.htm
Endoscopic Microvascular Decompression and Percutaneous Glycerol Rhizotomy Trigeminal Neuralgia surgery

http://www.clusterheadaches.com/wwwboard/messages/74124.html
Rodger Griffin (1-11-01, Stereotactic Radio Frequency Rhizotomy)

My opinion, Don't do it!

Title: Re: Gamma Knife !
Post by Elaine on Nov 3^rd, 2003, 3:49pm

Jeff I tried to call the number you gave me but get a voice mail that says service! I sent you my number you or your wife feel free to call. I hope if you are for real you read all this and think hard before you do anything like that.

Title: Re: Gamma Knife !
Post by Peppermint on Nov 3^rd, 2003, 4:09pm

Elaine,

I thought long before posting on this topic. You may remember my friend from Oklahoma was considering this very surgery and he'd read some articles which had some decent things to say. But they were old, I think maybe a few years ago when that procedure was relatively new.
He only, I'd say 3-4 mos. ago, was turned down by the insurance company. His doc really had not done much inquiry as to this procedure (he of course has another doc). At the time, I spoke with some people from the UK, rsearch-work-related to Doctor Goadsby, whom agreed that this procedure was actually not much considered of late, as there were much newer procedures available, and of course only after EVERY SINGLE option had been ruled out. The risks and potential damaging side-effects are very high, and the outcome is a gamble., i.e. drooping, numbness on the face, blinding in the eye and the ultimate, ch's coming back on the other side.

Forgetfulnot gave some good info on a Meds-section thread which of course I can't find now. ...I'll keep looking...it was a few months ago.

sincerely hope this is not his last recourse. My bud felt he had no other, but after some hard work, he has a new doc, and things are finally looking up after a long 4 years of being chronic.

Jeff, if you're out there, please re-consider, do more research, is there anything left to try?

I'm sorry its gotten this bad for you. :(

Title: Re: Gamma Knife !
Post by BarbaraD on Nov 3^rd, 2003, 7:43pm

Ok, so this is NOT the same Lee? I read it wrong. Sorry....

Sometimes when the doc says you're out of choices - you will try anything. I know I did with the STRFTR back in 99. Of course, you can't look back. It was an 80/20 chance going in that it would work - it didn't and I was left with permanent damage, but at the time, it was that or a bullet.

Only later did Topamax come along and it worked (at least up until lately). So until you've been there -

But I will say this, think long and hard about it BEFORE you do anything. Learn all you can about the procedure. Then YOU and only YOU can make the decision.

Good luck with whatever you decide.....

Hugs BD