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Title: Interesting study for chronics Post by henzey on Feb 17th, 2004, 3:10pm Just found this interesting study published in Neuromodulation Journal in July 2003. Might be some hope for chronics who are not responsive to medications. It appears that high-frequency stimulation electrodes implanted in the hypothalmus of 8 chronics had a very good success rate thus far, with no side effects reported thus far. http://www.blackwell-synergy.com/links/doi/10.1046/j.1525-1403.2003.03027_21.x/full/ |
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Title: Re: Interesting study for chronics Post by thomas on Feb 17th, 2004, 7:39pm hhmmmmmmm for some reason, I can't get that link to work for me............ :( |
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Title: Re: Interesting study for chronics Post by Prense on Feb 17th, 2004, 8:47pm on 02/17/04 at 19:39:44, thomas wrote:
Ditto... |
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Title: Re: Interesting study for chronics Post by firebrix on Feb 17th, 2004, 9:06pm Its a pay-to-view site but we'd love to read it henzey! Any chance of copying and pasting it? many thanx firebrix |
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Title: Re: Interesting study for chronics Post by pubgirl on Feb 17th, 2004, 9:14pm This has been widely reported and discussed at some length here last year if you check the archives. The hypothalamus implants are regarded by most of the world CH experts as the last chance saloon at the moment for chronics as the ONSI procedure is far less dangerous. We are talking serious experimental brain surgery here with a genuine risk of adverse events and even death. Wendy |
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Title: Re: Interesting study for chronics Post by pubgirl on Feb 17th, 2004, 9:20pm full pdf file of report link below (rather than an abstract you have to pay for) http://www.motorcortex.it/neurosurgery-cluster.pdf |
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Title: Re: Interesting study for chronics Post by Alan on Feb 17th, 2004, 11:26pm Thomas, the link didnt work because it's a med site for "pay as you read". Here is a link which gives the mile high report. Note this info came out last April.... Regards, Alan http://www.healthscout.com/news/68/8006029/main.html |
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Title: Re: Interesting study for chronics Post by firebrix on Feb 18th, 2004, 12:02am Thank you! I HAVE read it but others may be interested. (Never under-estimate the desperation of the chronic, pubgirl!) firebrix |
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Title: Re: Interesting study for chronics Post by pubgirl on Feb 18th, 2004, 3:19am hey Firebrix, I wouldn't underestimate it, and am sure I would try almost anything if I were chronic, but I find it rather terrifying that when ONLY 8 people have been operated on Franzini feels able to say: "The ... stimulation treatment is a safe and effective alternative for treatment of drug-resistant chronic cluster headaches." For what it's worth, Goadsby publicly warned of the dangers of neurosurgery of this kind and he and his team are scheduling ONSI procedures, not hypothalamus implants. Wendy |
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Title: Re: Interesting study for chronics Post by J.ten_Dam on Feb 18th, 2004, 5:20am [smiley=huh.gif] At th last clusterheadach meeting here in holland Dr Couturier mentiond high-frequency stimulation electrodes implanted in the hypothalmus of 8 chronics had a very good success rate thus far, with two deaths occuring one in belgium and one in Italy if I recall correctly. However they are now doing the same prosedure but in the nek and it seems to be working very well. They place electrods like a pacemaker on both sids so that the CH dose not switch from side. This prosedure is not dangerus like the one inplanted in the hypothalamus which is located in the brain. I have been searching the dutch web for more information but have not jet succeded |
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Title: Re: Interesting study for chronics Post by pubgirl on Feb 18th, 2004, 8:35am J ten Dam You are describing the ONSI (Occipital Nerve Stimulator implant) procedure I was talking about! There are loads of posts about it already and some people who visit here have had it done (Unsolved is due to have it done shortly or has already). IT IS NOT THE SAME AS THE HYPOTHALAMIC IMPLANT, as the implants and 'battery' are subcutaneous, not in the brain itself. I had not heard about the deaths from the hypothalamic implant, but it doesn't surprise me, and certainly validates Goadsby's expressed fears if it is true Wendy |
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Title: Re: Interesting study for chronics Post by KevinD on Feb 18th, 2004, 9:25am I have been researching this myself and it is considered a last resort. Next month I will try to talk my new neuro into having this done. Its been done more than 8 times. As far as I know, 1 guy hemorraged and died and I am pretty sure this was in the first group of 20 when it was first done in Italy. I'm in Philly and I know its been done here. Its also done at the Mayo Clinic in Arizona and Florida. Somebody mentioned an ONSI procedure that I never heard of but will look into. I did not know Goadsby was warning against this. I actually thought I read that he was excited by this procedure. Any surgery is risky. If my doc told me I could have it done today, I would do it in a heart beat. In my opinion, this is our closest thing to a cure. And unless there figure something else out, I guarantee this will become a popular treatment for all of us chronics in the not to distant future. |
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Title: Re: Interesting study for chronics Post by pubgirl on Feb 18th, 2004, 10:21am KEVIN You wrote "Somebody mentioned an ONSI procedure that I never heard of but will look into. I did not know Goadsby was warning against this. I actually thought I read that he was excited by this procedure." YOU ARE COMPLETELY MISREADING ME, PLEASE READ AGAIN. GOADSBY WAS WARNING AGAINST THE DANGERS OF THE DEEP BRAIN IMPLANTS NOT THE ONSI. HE AND HIS SURGICAL TEAM ARE DOING ONSI'S. Sorry Kevin, don't mean to look like I'm shouting, but I don't want people reading this who may be contemplating the ONSI to misunderstand as you did. |
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Title: Re: Interesting study for chronics Post by henzey on Feb 18th, 2004, 11:23am Hey...sorry the weblink did not work....I found it using Google and did not have to join to get in. I have cut and pasted the studey summary below. I do think that this is referring to ONSI....but not at all sure. We present the first series of cases of intractable chronic cluster headache successfully treated by electrode implant into, and stimulation of, the inferior posterior hypothalamic gray matter. Background Go to: GO up down Cluster headache is the most severe and debilitating of the primary headaches. Chronic cluster headache, unresponsive to medication, is a major (but thankfully rare) problem in clinical practice. In such cases, various surgical approaches have been tried with poor outcome. In a recent positron emission tomography (PET) study, the inferior posterior hypothalamic gray matter ipsilateral to the pain was shown to be activated during cluster headache attacks (May A et al., Lancet 1998). This and other evidence indicates that the cluster headache generator is located in this region, and this fact led us to consider this hypothalamic area as a potential target for neuromodulatory therapy for cluster headache. The condition was diagnosed according to International Headache Society criteria. Brain and orbital MRI, CT-angiography, and other examinations were all unremarkable. Design/Methods Go to: GO up down After informed consent, quadropolar electrodes (Medtronic, Inc., Minneapolis, Minnesota, USA) were implanted stereotactically into the inferior posterior hypothalamic gray matter homolateral to the pain (May A et al., Nature Medicine 1999) in eight patients, ages, 38-69 years, 5 males and 3 females, the aim being to interact with neuronal activation of this area. Results Go to: GO up down At last follow up (24 to 8 months) all eight patients are pain free without medication treatment. When the stimulator is switched off the typical attacks reappear; when the stimulator is switched on, the attacks disappear again. No side effects (changes in arterial blood pressure, heart rate or skin temperature) were observed during intraoperative stimulation or during the post-operative corse in all patients. All patients underwent postoperative PET in "on and off" stimulation. Body temperature, arterial pressure and heart rate were monitored for 24 hours before and after the hypothalamic implant. Conclusions Go to: GO up These cases provide confirmation that the cluster headache generator is located in the hypothalamus and that the high frequency (185 hz) chronic stimulation is effective in relieving this pain syndrome. |
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Title: Re: Interesting study for chronics Post by J.ten_Dam on Feb 18th, 2004, 11:38am ;;D Pubgirl I think kevin was referring to: "It appears that high-frequency stimulation electrodes implanted in the hypothalmus of 8 chronics had a very good success rate thus far, with no side effects reported thus far. " in the message that Henzey first placed this morning. [smiley=huh.gif] It is importent not to get our viers crossed. We are talking about two procedurs here. 1)that high-frequency stimulation electrodes mplanted in the hypothalmus according to DR Couturier this procedure has lead to two deaths because of hemorage in the brain. 2)Occipital Nerve Stimulator implant According to DR Couturier very effwective and no complications sofar as wel as being a small sergical procedure. Am I correct? |
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Title: Re: Interesting study for chronics Post by pubgirl on Feb 18th, 2004, 1:53pm Absolutely right. Two VERY different procedures, with two VERY different levels of risk involved. The hypothalamic implant operations (the one Henzey introduced and were conducted by the Italians NOT GOADSBY) involve complicated and risky neurosurgery, as as we all probably know, the hypothalamus is situated deep in the brain. I have no idea if there have been any deaths from this, but bow to other's superior knowledge. The ONSI procedure is usually done under general anaesthetic, there is some but low risk as with anything but the Occipital nerve implant(s) is (are) subcutaneous but EXTERNAL, NOT in the brain (early ONSI's were done on one side only, but I hear that now they are doing both sides for some to prevent the CH jumping sides) The guy I know who has had it done had the battery power supply (a kind of pacemaker if you like) inserted subcutaneously on his chest. You can feel it just under the skin (if he'll let you!) As clearly as I understand it, Queen's Square (Goadsby's London people) have done ONSI and plan more. They have no intention as we speak certainly of any conducting any deep brain operations at all and at his last presentation to OUCH UK, we were told that he was too unhappy with the risks involved to contemplate it. Hope that clarifies further Wendy |
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Title: Re: Interesting study for chronics Post by KevinD on Feb 18th, 2004, 3:34pm I knew what you meant, maybe I didn't put it to words clearly. Don't worry, I wasn't offended by the screaming. Scream at me whenever you feel I deserve it!! |
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Title: Re: Interesting study for chronics Post by pubgirl on Feb 18th, 2004, 4:28pm Bless you Kevin. Just being Mrs Cautious about misunderstandings as usual! Wendy |
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Title: Re: Interesting study for chronics Post by Tom on Feb 18th, 2004, 5:03pm Please read: http://www.clusterheadaches.org/library/surgery/occipital_stim.htm |
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Title: Re: Interesting study for chronics Post by UN_SOLVED on Feb 23rd, 2004, 12:01am The hypothalmus implant is not available in the US. Doctors from the Cleveland clinic are the doctors responsible for teaching doctors in Italy and elsewhere on this procedure. Dr. Rozen from MHNI said that no one has died and it has 'been very successful'. I'm waiting on the ONSI procedure now. The only hold up is $$. I have to stay in Michigan near MHNI for up to 2 weeks after the procedure. I'm now ready (after a 7 week wait) and should know something this week. I'll keep everyone posted when I go. Unsolved |
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Title: Re: Interesting study for chronics Post by pubgirl on Feb 23rd, 2004, 4:53am Unsolved I didn't think anyone had died. Thanks for confirming that. I was pretty sure that we would have heard about it if it was so. Thanks for your update, was wondering what was happening and how you were. Wishing you all the best for the op. [smiley=thumb.gif] Wendy P.S. The guy you talked to in the UK has his date scheduled now for next month for having the other side done so he is relieved. |
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