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        New Message Board Archives >> Medications, Treatments, Therapies 2002 >> New News!!!
        
(Message started by: brain_cramps on Sep 26^th, 2002, 10:32pm)

Title: New News!!!
Post by brain_cramps on Sep 26^th, 2002, 10:32pm

I haven't been here for about 18 months, but returned today for an obvious reason. The first day of a new cluster and I just had to look around.

I found the following article that just came out today!

http://reuters.com/news_article.jhtml?type=healthnews&StoryID=1501502

Comments, anyone?

Title: Re: New News!!!
Post by SteveY on Sep 27^th, 2002, 3:26am

Sounds like excellent news, especially as this stimulater is not placed in the brain.

That would mean surgery would be less invasive.

Cure?

I think I'd give it a go.

The Mayo clinic and Goadsby, that's a powerful combination, if they're excited about it, we should be to.

Do they have a DIY kit? ;D

Steve

Title: Re: New News!!!
Post by Marshall_D on Sep 27^th, 2002, 6:02am

I was under the impression, by my many Doctor's through the years, that by doing an Occipital Nerve Block it would not effect Cluster Headaches...Well I'm glad they were wrong and now there is a study to prove that it has some benefit. :D

I don't think I was actually WRONG ::), just MISINFORMED ::)

Title: Re: New News!!!
Post by SteveY on Sep 27^th, 2002, 6:32am

I don't think this is a block, it's stimulation of the occipital nerve, not the same as a block by botox etc.

Title: Re: New News!!!
Post by Marshall_D on Sep 27^th, 2002, 8:23am

My post does sound strange, if you didn't read the replies I posted to a one or two people asking about Occipital Nerve Blocks...On the paper attached by Brain Cramps, it stated that prior to getting the stimulator the patient had a few days to a few weeks relief from Occipital Nerve Blocks which lead the Investigators to stimulate the Occipital Nerve. I have received 4 Occipital Nerve Blocks for other then Cluster Pain Relief (Neck). And I was always told that they would have no effect on Clusters. So, I posted this reply, when asked about success with Occipital Blocks.

Sorry, for the confusion, Steve. But I'm glad there is something that is working....

Title: Re: New News!!!
Post by lezotte on Sep 28^th, 2002, 11:08am

Unbelievable! after 25 years I have some thing that works. It is new to the market. It's called FROVA. I just had my first whole night sleep in two weeks without :D being wokenup.

Spread the news.

FROVA or Frovatriptan Succinate

Title: Re: New News!!!
Post by notseinfeld on Sep 30^th, 2002, 4:49pm

I figured the entire board would be a-stir over this article with the chronics in particular. What gives? Frankly, my bags are packed on the way to Arizona and if being a cyborg means ridding myself of this horrendous pain, then step aside Arnold!

Faxed the article to my neuro and will give her a continual grilling until I'm in line for this treatment. Much to the dismay of the Verapamil, Depakote, Prednisone, Neurontin, etc etc companies this sounds like a great path to travel. What am I missing/overlooking?

nots

Title: Re: New News!!!
Post by maria on Sep 30^th, 2002, 6:32pm

I wonder what the cost of this stimulater is and if insurance will cover it. I assume it would cost a similar price as a vagus nerve stimulater, which is FDA approved for treating Epilepsy and which is being used on an experimental basis for treatment of chronic depression and anxiety. The cost for the vagus nerve stimulater is estimated between $14,000 - 20,000. Here is the link for the vagus nerve stimulater:

http://my.webmd.com/encyclopedia/article/1812.50800

Maria

Title: Re: New News!!!
Post by SteveY on Oct 1^st, 2002, 1:10am

Notseinfeld,

I agree with you, I thought there would have been more interest.

Perhaps it is confused with the occipital nerve block, rather than the stimulater.

Am I interested?

Left 10 messages with Goadsby's secretary, if I could find out where he lived, I'd camp out on his lawn.

He's still in the States apparantly, might go to the airport and meet him ;D

Become a borg, resistance is futile.

Steve

Title: Re: New News!!!
Post by Riccardo on Oct 1^st, 2002, 8:40am

Maria, the stimulator you are talking about is the "father" of Doc Leone one.

In fact, the Doc. Leone team used that stimulator and adapted to CH characteristics

****** Just to leave some right info, THIS answer is right. Dr Leone used first this stimulator for his "deeper" stereotactic hypotalamic stimulation*****

***** While in topic I apologize for my out of topic answer on the other side of the board (general posts), I am the culprit of the misunderstanding...... sorry******

Title: Re: New News!!!
Post by Marshall_D on Oct 1^st, 2002, 9:01am

I think there will always be some sort of hesitation, when it comes to surgery...I would ask where the Stimulator is placed. Obviously, depending on the size, it would be placed either in the lower neck area or chest wall with leads running to the Greater Occipital nerve. Also, I would wait for a greater number of patients, who have had success with this implant. It seems to run along the same lines as the Spinal Cord Stimulator (SCS), which has varying degrees of success for Spinal Cord Nerve Pain.

But, I'm episodic. If I was chronic, I would probably be calling for their next appointment!

Title: Re: New News!!!
Post by maria on Oct 1^st, 2002, 9:36am

Riccardo, I think the surgery you decribed in the general posts, that is being done in Italy, is different than the occipital nerve stimulater described in this thread. The surgery you described is stimulating the hypothalamus. With the occipital nerve stimulater, the device is implanted under the skin at the base of the skull. This sounds like a far less invasive type of surgery than what you describe where the surgeons are actually going into the brain (hypothalamus). :) Maria

Title: Re: New News!!!
Post by Ueli on Oct 1^st, 2002, 10:07am

Talk about journalists meddling up everything; but the real mess is done by readers/watchers that only skim the reports or base their comment on hearsay and guesswork. >:(

From the Reuters release
Implanted Device Wipes Out Cluster Headaches to be found at
[url]http://reuters.com/news_article.jhtml?type=healthnews&StoryID=1501502
it follows:

The procedure in question was not done in England. Instead in London there was recently a Migraine Trust International Symposium, headed by Prof Goadsby.

On this symposium was a report from Dr. David Dodick of the Mayo Clinic in Scottsdale, Arizona.
He told of a CH patient that had now 7 (not 4) month of relieve from a stimulator of the occipital nerve (which is easily accessible under the skin at back of the head). A stimulation of the occipital nerve suppresses the pain signals in the trigeminal nerve, as is known from other studies.

The work of Dr Massimo Leone is mentioned as well. The big difference is this: While Leone's implanting of electrodes to the hypothalamus involves risky and expensive brain surgery, the stimulator of Dodick is implanted just under the skin at the back of the head, something that probably can be done under local anesthesia in less than an hour, at much lower risk and cost than brain surgery.

PFNADs
Ueli

BTW, On ABCnews.com I could not find anything about this, but instead something how to cure 50 million meegrainers with a plastic tooth piece, duh.

BTW2, If the boards where not filled with tons of rubbish, where people quote each other ad nauseam, maybe the relevant stuff got read more and people had time to follow some links.

Title: Re: New News!!!
Post by Bob P on Oct 1^st, 2002, 10:16am

Having a bad day Ueli?

Title: Re: New News!!!
Post by Ueli on Oct 1^st, 2002, 10:19am

Yes.

Title: Re: New News!!!
Post by SteveY on Oct 1^st, 2002, 11:05am

Tomorrow will be a better day Ueli.

Thanks for the info.

Steve