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        New Message Board Archives >> 2003 Posts >> Gamma knife FINALLY
        
(Message started by: HARTY on Oct 5^th, 2003, 6:14pm)

Title: Gamma knife FINALLY
Post by HARTY on Oct 5^th, 2003, 6:14pm

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.

Title: Re: Gamma knife FINALLY
Post by brain_cramps on Oct 5^th, 2003, 6:20pm

COOL!!!

While that procedure has been discussed here a couple times, I don't think anyone else went through with it. At least, I don't remember hearing the results of the procedure.

hoping that your pain-free time is permanent,
grant 8)

Title: Re: Gamma knife FINALLY
Post by cathy on Oct 5^th, 2003, 6:22pm

Hi Harty and welcome.....sorry you've had to endure so much pain in your life :-/ and absolutely made up that your PF at the moment.... ;D

I hope this surgery is a complete success for you, but I think before suggesting others take the same route you should wait at least 6 - 12 months before saying it has worked....no disrespect but 4 weeks isn't very long to say whether something has worked or not.....

Keep us posted and the very best pf wishes to you...

Cathy

Title: Re: Gamma knife FINALLY
Post by UnsolvedEquation on Oct 5^th, 2003, 7:31pm

WOW ! that sounds great. I just had the RF procedure. I was told that Gamma Knife could cause facial paralysis and/or loss of speech. Did you have any of these side effects? What about numbness in the face or neck? And where did you have this done at ?
Very interested...
~UnsolvedEquation~

Title: Re: Gamma knife FINALLY
Post by forgetfulnot on Oct 6^th, 2003, 2:42pm

Quote:

If anyone would like to discuss this a bit further Email me and we can arrange a phone call if you like

Harty, you did not tell us your E-Mail address, nor do we know anything else about you. Please tell us more about yourself.

Lee

Title: Re: Gamma knife FINALLY
Post by HARTY on Oct 6^th, 2003, 5:14pm

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.

Title: Re: Gamma knife FINALLY
Post by kissmyglass on Oct 6^th, 2003, 5:56pm

Thanks for the info Hardy,

Hope your Clusters never return.

My neuro says if the Lithium doesn't help That Gamma Knife is next on the list. I'd rather be a guinnea pig for the deep brain stimulation that the Italians are doing/have done.

Kev

Title: Re: Gamma knife FINALLY
Post by UnsolvedEquation on Oct 6^th, 2003, 9:01pm

I was told about Gamma Knife a few years ago but at that point it was still considered very risky, with a considerable chance of facial paralysis and/or loss of speech. They also said it might not even work and furthermore, IT WOULD NOT BE ATTEMPTED ON SOMEONE WHO HAS CLUSTERS ON BOTH SIDES. My clusters went from strictly the right side (for the first 12 years) to the left side, with every now and then a right sided cluster. 9 out of 10 of my clusters are on the left now. For this reason alone, they said they wouldn't attempt the Gamma Knife on me. This was all said maybe 2 years ago. Since then, I've had Sphenopalatine, Occipital, and facet Nerve Blocks...and the RFG (radio frequency) procedure (L C2-C3). They have considerably cut down my severe attacks but I still have been shadowing very hard everyday for long periods. Still a canidate for the Advanced Bionics chronic pain stimulator device.
It's good news that you have found success with this procedure and even better news that you didn't have any significant side effects. I hope your pain free days last forever. I will definately bring this to my doctors' attention and let them know about your success. If anything changes, please let us know on the board or IM me. Thanks,
~ Unsolved ~

Title: Re: Gamma knife FINALLY
Post by forgetfulnot on Oct 6^th, 2003, 9:39pm

Harty, this sort of information is critical to many chronic clusterheads on this board. I thank you for telling us more about yourself. I myself tried to have GK surgery a few years ago, only to be turned down by my HMO.

Please keep us appraised of your situation.

Lee

Title: Re: Gamma knife FINALLY
Post by HARTY on Oct 7^th, 2003, 5:25pm

Lee,
My health carrier told me that GK surgery would not be covered for cluster headache but that it would be for trigeminal neuralgia. My Neuro told me he could call and get it approved. He called and explained it was the same procedure and that it was the only thing left to stop the chronic pain I had experienced for 23 years. Then they approved.
As to complications and side effects they have virtually been eliminated in the last couple years.Ispoke with many doctors about this until I was comfortable.

Title: Re: Gamma knife FINALLY
Post by Charlie on Oct 7^th, 2003, 6:32pm

Welcome aboard Harty.

Good news is.......well, good news. I don't think we've heard much about gamma knife after the fact. It seems that we read only that others were considering it. In any case, it's great and it's good to meet you.

Hope you stick around too.

Charlie