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Topic: GammaKnife Radiosurgury (Read 285 times) |
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tpitts77
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GammaKnife Radiosurgury
« on: Mar 14th, 2007, 3:17pm » |
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After the suggestion of my neurologist, we found a Neurosurgeon in Pittsburgh that has performed Gamma Knife Radiosurgury on 6 patients with cluster headaches.
He said that he he still evaluating them. He wants to evalute me as a canidate for the surgury.
I have beeen researching this I much as I can for the last week or so. I am seeing pretty mixed results, but it looks like over half of the people are living painfree.
If there is anyone here that has went through this procedure could you please advise me. PROS/CONS of your experience.
The other post on this subject here looks pretty shady. 
Thanks,
Tony
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tommyD
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Re: GammaKnife Radiosurgury
« Reply #1 on: Mar 14th, 2007, 5:50pm » |
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Here's the clue
Quote:a Neurosurgeon in Pittsburgh that has performed Gamma Knife Radiosurgury on 6 patients with cluster headaches.
He said that he he still evaluating them. |
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In other words, he wants to consider you for surgery, but doesn't know if it works or not. Tell him when all 6 have found lasting relief, you will consider it.
So far Gamma Knife surgery has NOT had a good track record for the treament of clusters.
Good neuros will usually not suggest surgery unless all other treatments have failed.
And unless you have tried ALL the usual meds, AND all the alternative meds (seeds, shrooms, kudzu, taurine), with no relief, surgery is not an apppropriate option.
just mho
-tommyD
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www.clusterbusters.com
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E-Double
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Re: GammaKnife Radiosurgury
« Reply #2 on: Mar 14th, 2007, 7:39pm » |
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Ditto the above!!!!!!!!!!
PF wishes
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LeLimey
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Re: GammaKnife Radiosurgury
« Reply #3 on: Mar 14th, 2007, 7:43pm » |
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Triplicate the above even!
I'm sorry hon but I don't know of anyone for whom it hasn't been an unmitigated disaster with nerves growing back, hits changing sides and a whole host of other stuff.
If it was REALLY a viable option they wouldn't have looked for newer procedures since, not that any of those have had much success either but this is an OLD surgery and its not been successful so it's not something I'd consider or allow someone else to consider without voicing my reservations.
Helen
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Gator
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Re: GammaKnife Radiosurgury
« Reply #4 on: Mar 14th, 2007, 9:58pm » |
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All the other stuff in those threads aside, the research speaks for itself:
Quote:
Neurosurgery. 2006 Dec;59(6):1252-7; discussion 1257.
Trigeminal nerve radiosurgical treatment in intractable chronic cluster headache: unexpected high toxicity.
CONCLUSION: We confirmed, with medium- and long-term evaluation, the high rate of toxicity and failure of the technique. The high toxicity, despite a methodology identical to the one used in trigeminal neuralgia, leads us to suspect an underlying specificity of the nerve in CCH. We do not recommend radiosurgery for treatment of intractable CCH.
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Quote: Neurosurgery. 2006 Dec;59(6):1258-62; discussion 1262-3.
Long-term results of radiosurgery for refractory cluster headache.
CONCLUSION: Although some patients may experience short-term pain relief, none had relief sustainable for longer than 2 years. The results from this series indicate that radiosurgery of the trigeminal nerve does not provide long-term pain relief for medically refractory CH.
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Quote:
"Headache" Febr. 2007:
Repeat trigeminal nerve radiosurgery for refractory cluster headache fails to provide long-term pain relief.
Conclusion.-Repeat radiosurgery of the trigeminal nerve fails to provide long-term pain relief for MRCH. Given the reported failures of initial and repeat radiosurgery for MRCH, trigeminal nerve radiosurgery should not be offered for MRCH.
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All that being said, you have to do what is right for you. Just make sure your decision is an informed one based on fact, not hype.
We will be here for you no matter what you decide to do.
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AlienSpaceGuy
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Re: GammaKnife Radiosurgury
« Reply #5 on: Mar 14th, 2007, 11:51pm » |
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That neurosurgeon would probably recommend the amputation of a foot to 'cure' an ingrown toe nail. 
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BB
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Re: GammaKnife Radiosurgury
« Reply #6 on: Mar 15th, 2007, 12:03am » |
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And when the ingrown toenail occurs on the other foot, he will say sorry nothing can be done now, we cant chop off both feet because then you have nothing left to walk with!
This is exactly what has happened to people for whom CH returned to the other side of the face/head: " too bad it came back, sorry cant do much now, you go back on oral medications ...."
Not a good option in my opinion.
Annette
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tpitts77
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Re: GammaKnife Radiosurgury
« Reply #7 on: Mar 15th, 2007, 3:10pm » |
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I have tryed all the usual meds and some of the alt meds, thats the only reason I am considering. The are f..ing shooting radiation at your head!
I've been chronic for 10 years now and am willing to try about anything.
When I read some of the studies on this (not just the conclusions) it says that some people have been painfree since the surgury. That gives me some hope.
I'm only 30 years old, I take a handful a pills twice a day, shootup with Imitrex at least twice a day, and have oxygen tanks in my bedroom.
Whats' a little radiation in the brain gonna hurt!! 
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Re: GammaKnife Radiosurgury
« Reply #8 on: Mar 15th, 2007, 7:15pm » |
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I'll bet you still have plenty to try. Don't give up yet.
UNsolved
PS. Histamine Rocks !!
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gore2424
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Re: GammaKnife Radiosurgury
« Reply #9 on: Mar 17th, 2007, 8:57am » |
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in march 2002 after being chronic since Nov 1999 - 16 years before just spring and fall I went to the Mayo clinic in Rochester Minn. to see about the gamma knife procedure. Dr Duddly Davis said that it wasnt the way to go because of the very low success rate instead he said he did the trigeminal rhizotomy where they cut the trigeminal nerve on the side of headache. Dr Davis had done 5 in the last 3 years. 1 person it did nothing , 3 people full relief and 1 pain level down enough for them to go back to work. So since 1996 having tried 67 different meds in many combos being in hospital for 3-5 days every other month ER trips 1-5 times a month I decided to do it in may 2002 off work for 8 weeks (pay sucked big time) hardest part of this operation was learning to eat without biting inside cheek or tonuge on right side of face and this operation cannot be reversed. and here is the worse part after 4 months clusters came back full force. right now i wear a fentynal 75 pain patch and am allowed 12 per month 10mg morphine shots for the bad days and nites. i must state that everyone is different with how they manage their clusters & pain meds are working for me I ussally have 1-3 shots left over after the month so I just wait til I am down to 2 since now it takes 48 hours til my neuro will give me a script for the shots Terry
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