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Topic: Deep Brain Stimulation Therapy for Clusters (Read 274 times) |
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watchandwaitr
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Deep Brain Stimulation Therapy for Clusters
« on: Sep 30th, 2006, 10:42am » |
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Has anyone tried this or know of anyone who tried this. Evidently they have been doing this in Italy. Read article in Neurology Reviews.com dated April 2005. A doctor Massimo Leone, MD. had been doing these operations since 2000. My husband is desperate and thinks this may be a way out of his 20 year battle with Chronic Cluster Headaches. So if you know of someone or heard of someone who has had this, and know of someone in the United States who has does this surgery. Please let me know!
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Remaining strong for him.
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eyepopper
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Re: Deep Brain Stimulation Therapy for Clust
« Reply #1 on: Sep 30th, 2006, 7:28pm » |
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I just found a new neurologist who has been wonderful. One of the things that he told me about was this Deep Brain Stimulation thing. It is still very new.
He said that it has been in Europe for a few years, and we were going to start hearing more about it here in the U.S., but to steer clear of it for now. He feels that inserting anything into the deep brain is "risky business", and in a nutshell I took it that he felt that one should not open oneself up to be a guinea pig.
He said it is better to give it some time, and try methods which have provided the most success to others, i.e. oxygen, triptans, verapamil, melatonin, etc.
. . . just one opionion (but for me, a valued one.)
Deb
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unsolved1
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Re: Deep Brain Stimulation Therapy for Clust
« Reply #2 on: Sep 30th, 2006, 8:57pm » |
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He'd have to meet a bunch of criteria before they would ever sonsider it. You'd need to talk to Dr. Black from the Mayo Clinic. He's done it in the US and may still need candidates.
I believe as of 5/10/2006 ... Dr. Black placed 2 stimulators and both failed  The Italian's were boasting of more attempts and of better success.
If you want Dr. Black's e-mail address, PM me. Him or Dr. Todd Rozen from MHNI are the one's to talk to about this.
Goodluck
UNsolved
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nani
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Re: Deep Brain Stimulation Therapy for Clusters
« Reply #3 on: Oct 1st, 2006, 10:34am » |
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Before I would even remotely consider something so invasive, I would be sure I tried everything, including alternative treatments. What has your husband tried? We may have a lot to offer in the way of treatment info.
Has he looked at the kudzu threads on the top of the Medications board? Or, has he visited the www.clusterbusters.com website?
Better options than a probe in the brain that's for sure.
pf wishes to your home, nani
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Carl_D
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Re: Deep Brain Stimulation Therapy for Clusters
« Reply #4 on: Oct 1st, 2006, 5:58pm » |
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My neuro had mentioned this as an option. At the time I believe there were 6 of these surgeries performed. 2 candidates died (there is high risk for brain hemmorrage), 2 were unsuccessful and the two that were chronic that it helped - the CH returned within 6 months. I decided I wouldn't take the chance until they have done it with alot more of a success rate.
There have been a few folks who have had what is known as "Gamma Knife" surgery where they go in and try to sever certain nerves. One side effect is that a person can look as if they have had a stroke and lose some facial muscle control. Also, it did not cure the CH is some.
Peace,
Carl
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