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        New Message Board Archives >> Medications, Treatments, Therapies 2004 >> Fresh Research - Bilateral Hypothalamus Implants
        
(Message started by: floridian on Aug 27^th, 2004, 8:33am)

Title: Fresh Research - Bilateral Hypothalamus Implants
Post by floridian on Aug 27^th, 2004, 8:33am

Quote:

Brain. 2004 Aug 25 [Epub ahead of print]

Long-term follow-up of bilateral hypothalamic stimulation for intractable cluster headache.

Leone M, Franzini A, Broggi G, May A, Bussone G.

Istituto Nazionale Neurologico Carlo Besta, Milan, Italy.

Summary We provide a detailed case history of the first patient to receive bilateral hypothalamic stimulation to control severe bilateral chronic intractable cluster headaches initially occurring mostly on the left. These attacks were accompanied by life-threatening hypertensive crises and a grave deterioration in the patient's psychological state. Destructive surgery to the left trigeminal was absolutely contraindicated. Electrode implantation and continuous stimulation of the left posterior inferior hypothalamus resolved the left attacks. After four destructive operations on the right trigeminal, right side attacks recurred. Electrode implantation (with continuous stimulation) to the right resulted in immediate resolution of the right side pain and the hypertensive crises. On several occasions, both known and unknown to the patient, the stimulators were turned off: in all cases, crises reappeared and in all instances disappeared relatively quickly after turning stimulation back on. Pain crises have never reappeared when ipsilateral stimulation is ongoing. The only side effects were observed during long-term bilateral stimulation, consisting of transient vertigo and bradycardia. After 42 months (left) and 31 months (right) of follow-up, the patient remains crisis free without the need for pharmacological prophylaxis.

Title: Re: Fresh Research - Bilateral Hypothalamus Implan
Post by notseinfeld on Aug 27^th, 2004, 10:03am

WOW!

Title: Re: Fresh Research - Bilateral Hypothalamus Implan
Post by IndianaJohn on Aug 27^th, 2004, 10:10am

Not for sure, but I think that Un_solved went through this...

Title: Re: Fresh Research - Bilateral Hypothalamus Implan
Post by pubgirl on Aug 27^th, 2004, 4:48pm

No, Unsolved had a temporary bilateral ONSI (Occipital Nerve Stimulator Implant) which wasn't successful. This is NOT the hypothalamic implant mentioned in this extract (only the Italians are doing this I think - Belgians did some and had a death). Current evidence here (nothing conclusive yet as few people have had it done) suggests that the ONSI needs to be in place for a period of time for the electrodes to held securely by scar tissue and the stimulator to be calibrated to work properly.

The first unilateral ONSI here resulted in the CH jumping ship to the other side, so looks pointless

Wendy

Title: Re: Fresh Research - Bilateral Hypothalamus Implan
Post by ZAIRA on Aug 27^th, 2004, 5:02pm

I have read it in Italian and I am so happy for Marco. Because he really deserves a break! Really! I feel lucky if I think about him.

on 08/27/04 at 16:48:41, pubgirl wrote:

(only the Italians are doing this I think - Belgians did some and had a death). Wendy

Right, Wendy!

P.S. (BTW, even if Italy doesn't invest too much in research, we CH's are lucky because there are Institutes like "Carlo Besta" of Milan where neurologists like Bussone (my neuro ;;D) or Leone are doing their best for saving our lives!)

Title: Re: Fresh Research - Bilateral Hypothalamus Implan
Post by pubgirl on Aug 27^th, 2004, 5:06pm

Hi Zaira

It's good to know that the Italian and Uk doctors are trying to push the boundaries where Ch treatment is concerned.

But I still wouldn't have the hypothalamic implant even if I was desperate as the risks are just too high. I can only assume that your friend in Italy must have run out of options.

Wendy

Title: Re: Fresh Research - Bilateral Hypothalamus Implan
Post by ZAIRA on Aug 27^th, 2004, 5:25pm

Wendy.... yes, Marco was so desperate that he decided to do that operation... no meds was working....

And now OUCH Italia has a girl that received bilateral hypothalamic stimulation... and, sadly, still she is having hard attacks... :'(

Honestly, it will be the last thing will do for CH right now...

:'(

Title: Re: Fresh Research - Bilateral Hypothalamus Implan
Post by Kevin_M on Aug 27^th, 2004, 7:34pm

on 08/27/04 at 16:48:41, pubgirl wrote:

No, Unsolved had a temporary bilateral ONSI (Occipital Nerve Stimulator Implant) which wasn't successful.

Wendy, true this is what Michael had, however, I think when I talked to him in Nashville he was planning on having this operation done too. I believe he has mentioned this online somewhere awhile back. He's been missing lately though.

Kevin M

Title: Re: Fresh Research - Bilateral Hypothalamus Implan
Post by pubgirl on Aug 28^th, 2004, 2:13am

Kevin

Are you sure?
Not sure where he is going to have it done as as far as I know it's not being done in the States, and it definitely isn't here as PG currently considers it too high risk and little evidence it works

Michael/Unsolved
Check in ,where are you?

Wendy

Title: Re: Fresh Research - Bilateral Hypothalamus Implan
Post by Kevin_M on Aug 28^th, 2004, 11:07am

Wendy,

He mentioned he would be the first in this country to have it done. Last I heard, he went to U of M and did well for a short time but then something stopped working for him. He was slated to have this operation done if that last treatment didn't work.
The doctor from South America at the convention spoke of this operation and on the break following that, I was talking with Michael about it. This is what he was refering to because he quoted me all the same results at that time and the countries in which it had been done, mentioning the same two countries and the amount of people that had it done. It seemed he was well briefed on it, even though he was not in attendance for the doctor's speech about it. I believe Thomas was with me during that conversation with him, because I remember looking at Thomas briefly before mentioning the death in Denmark to Michael, I was hesitant to tell him. I'm not sure Michael knew about that but he seemed to welcome the operation. Michael replied he knew about the death and mentioned something about how that operation went wrong, he knew about it and some details too.

Kevin M