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Bob_Johnson
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Chronic cluster: hypothalamic stimulation
« on: Feb 23rd, 2005, 12:09pm »
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Brain. 2005 Feb 2;  
 
   
Hypothalamic stimulation in chronic cluster headache: a pilot study of efficacy and mode of action.
 
Schoenen J, Di Clemente L, Vandenheede M, Fumal A, De Pasqua V, Mouchamps M, Remacle JM, de Noordhout AM.
 
University Department of Neurology, University of Liege, Liege, Belgium; University Department of Neuroanatomy, University of Liege, Liege, Belgium.
 
Summary We enrolled six patients suffering from refractory chronic cluster headache in a pilot trial of neurostimulation of the ipsilateral ventroposterior hypothalamus using the stereotactic coordinates published previously. After the varying durations needed to determine optimal stimulation parameters and a mean follow-up of 14.5 months, the clinical outcome is excellent in three patients (two are pain-free; one has fewer than three attacks per month), but unsatisfactory in one patient, who only has had transient remissions. Mean voltage is 3.28 V, diplopia being the major factor limiting its increase. When the stimulator was switched off in one pain-free patient, attacks resumed after 3 months until it was turned on again. In one patient the implantation procedure had to be interrupted because of a panic attack with autonomic disturbances. Another patient died from an intracerebral haemorrhage that developed along the lead tract several hours after surgery; there were no other vascular changes on post-mortem examination. After 1 month, the hypothalamic stimulation induced resistance against the attack-triggering agent nitroglycerin and tended to increase pain thresholds at extracephalic, but not at cephalic, sites. It had no detectable effect on neurohypophyseal hormones or melatonin excretion. We conclude that hypothalamic stimulation has remarkable efficacy in most, but not all, patients with treatment-resistant chronic cluster headache. Its efficacy is not due to a simple analgesic effect or to hormonal changes. Intracerebral haemorrhage cannot be neglected in the risk evaluation of the procedure. Whether it might be more prevalent than in deep-brain stimulation for movement disorders remains to be determined.
 
PMID: 15689358 [PubMed - as supplied by publisher]  
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Bob Johnson
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Re: Chronic cluster: hypothalamic stimulation
« Reply #1 on: Feb 23rd, 2005, 12:29pm »
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Interesting, Bob. One patient out of 6 died. That's not a good percentage. (If I wasn't a math 'tard I could tell you the %.) I've had a brain hemmorhage and honestly, THAT is the mother of all headaches. I sit here, having success with kudzu, and wonder how bad I'd have to get to take that risk... Undecided
Thanks for the info.
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Re: Chronic cluster: hypothalamic stimulation
« Reply #2 on: Feb 23rd, 2005, 1:02pm »
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"In one patient the implantation procedure had to be interrupted because of a panic attack with autonomic disturbances."
 
Induced after hearing the anesthesiologist discussing the previous day's patient.  
 
It does make you pause to realize the lengths to which CH sufferers will go, and that that alone makes us very likely to be targets in a way. Hats off to those that are forging the way.
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Re: Chronic cluster: hypothalamic stimulation
« Reply #3 on: Feb 23rd, 2005, 11:49pm »
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This operation originated at the University of Milan by Drs. Massimo Leone and Giovanni Broggi.  I was going to have it done and spent a week at the University of Bologna Neurology Clinic, this past October, undergoing a week of pre-operative testing.  I was scheduled to have the opertion done in Jan 2005, but based upon my experiences in Bologna (a horror story), I wrote to the doctors in Milan, mentioned above, and asked them a number of questions about the procedure, such as number performed, success rate, side effects, etc.  Suddenly the docs stopped communicating with me and I did not go for the operation.  I've learned that, despite the initial article that they wrote in, I believe 2003, in which they claimed virtually 100% success, the picture is quite different.  The operation does not work; it was also being done in Liege, about 1 hour from where I live, and they have stopped doing it since the patient died (that was a closely held secret).  Milan is the only place that the operation is still being performed, but the rest of the neurological community in Europe takes a dim view of the procedure.  In England another operation, Occipital Nerve Stimulation Implant (ONSI) has been done for about 1 1/2 years; it is less invasive but also has only been partially successful in one out of four cases.  I spoke with the surgeon who peforms it and he did not appear to be very enthusiastic about it anymore.  At this time, there is no operation for chronic CH that works.  I was going to get one of them done out of desperation, but after I did my research, I decided that I'm better off coping with the pain with my medications.  Neither of the operations are done in the US for CCH'; the implant is done for people with severe Parkinson's disease and it works for them but that success did not transfer over to CCH sufferers.
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Re: Chronic cluster: hypothalamic stimulation
« Reply #4 on: Feb 24th, 2005, 12:08am »
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If the one in six ratio is real, then this is a stupid call.....but if that sixth guy happened to be one in a thousand.......then we're missing the boat. I'd like to see this proceed, but I'm glad I'm not in charge or responsible. Brain implants. Holey moley.  
 
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Re: Chronic cluster: hypothalamic stimulation
« Reply #5 on: Feb 24th, 2005, 12:13am »
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The death occurred in Liege and that unfortunate person was the fourth patient to receive the operation there; the operation is no longer being performed in Liege as they have still not determined why the person died-she bled to death, but it has not yet been determined if it was due to a defect in a blood vessel in her brain or surgical incompetence.  Between Liege and Milan, about 10 operations have been performed.
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Re: Chronic cluster: hypothalamic stimulation
« Reply #6 on: Feb 24th, 2005, 11:04am »
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1 in 6 (17%) is probably not the real risk. For Parkinsons the incidence of stroke from deep brain stimulation is approximately 3% (still not too good). http://www.nice.org.uk/page.aspx?o=76521 I wouldn't expect anything significantly different for CH. A stroke isn't garanteed death, but they're no fun anyway. The publications make the procedure sound much more successful than jasckorohod says. Of course, as a scientist, I know that experiments that go well get published, those that go poorly are stored in a binder on someones shelf. Time will tell.
 
Jesse
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