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        New Message Board Archives >> 2002 Posts >> Is this new news?
        
(Message started by: Jabeen on Oct 12^th, 2002, 7:31pm)

Title: Is this new news?
Post by Jabeen on Oct 12^th, 2002, 7:31pm

Hello- a friend e-mailed this to me-I have to be honest, I have not read it through. I am only home on a 1 day layover and out again until 10/26. Checking e-mails is difficult. Just thought I'd throw it out there in case it had any new stuff and I apologize in advance if it is old. I have not read everything on the OUCH site and I know someone gets touchy about that! :) :) :)

http://www.realage.com/HB25/HB25.asp?wci=HArticle&cid=13644&sid=1021
Jabeen

Title: Re: Is this new news?
Post by Mark C on Oct 12^th, 2002, 8:30pm

Wow.

Title: Re: Is this new news?
Post by Ree on Oct 12^th, 2002, 9:41pm

sounds scarey :o

Title: Re: Is this new news?
Post by Marc on Oct 12^th, 2002, 10:58pm

Sounds really promising to me! (It was posted here a couple of times a couple of weks ago)

One of our "old timer" Clusterheads has already asked to be put on the list to try it!

Don't know about you guys, but I'm gonna stay tuned.......

Title: Re: Is this new news?
Post by 2late on Oct 13^th, 2002, 9:25am

If it work's count me in! ...........2late

Title: Re: Is this new news?
Post by catlind on Oct 16^th, 2002, 4:19pm

I personally volunteered to be a guinea pig for a med program once and won't ever do it again unless I'm terminal, not to mention my hubby won't let me hehe.

When I find out it works, then I'll be signing up with everyone else :)

Cat

Title: Re: Is this new news?
Post by Ted on Oct 16^th, 2002, 4:49pm

I just called them again about the status of my being part of their further studies with this. Unfortunately that office is just open 3 days a week so the message I left won't be gotten till Friday. If anything comes of this I'll update again.

Title: Re: Is this new news?
Post by jonny on Oct 16^th, 2002, 4:59pm

Hell no!!, not me I got my shit in check enough where I wouldnt let nobody be cutting on me no matter how small of a cut.

Now if that could work on my back id be there in a tutu and tap shoes (did I just say that?)

.......................jonny

Title: Re: Is this new news?
Post by echo on Oct 16^th, 2002, 5:03pm

Jonny in a tutu -- now thats a sobering thought.

Question is -- does he have the legs for it? ;D

Title: Re: Is this new news?
Post by jonny on Oct 16^th, 2002, 5:30pm

Echo,

You tell me if these legs would be good in a tutu....LOL

2Late, send me the hate mail this time.....LMMFAO ;D

http://www.a-dzign.com/jonny/jonny-working.jpg

..............................jonny

Title: Re: Is this new news?
Post by ShariRae on Oct 16^th, 2002, 9:27pm

whoa!!
Is indeed exciting news.. however..i think i will wait till the jury is in too. Been there done that on the "experimental drug test"
Wont go the experimental route again.. lol
huggsss
Shari

Title: Re: Is this new news?
Post by catlind on Oct 17^th, 2002, 7:14am

Well I've seen a picture that says Jonny would look just fine in a tutu...or a girdle... ;)

ROFLMAO

Cat

Title: Re: Is this new news?
Post by Ree on Oct 17^th, 2002, 7:25am

Nope me thinks jonny doesnt need a girdle... nor a tutu havent decided what he needs yet... giggle ree

Title: Re: Is this new news?
Post by echo on Oct 17^th, 2002, 10:00am

Go for it jonny. Now we know what to get jonny for Christmas. A red tutu with white feathery fringe. ;D

Title: Re: Is this new news?
Post by Georgia on Oct 17^th, 2002, 4:22pm

I e-mailed him this:

Hello
A brief report about the sucess of your implant technique and Dr. Goadsby's comments about it being praiseworthy has surfaced at clusterheadaches.com. There is a very active message board at this site read by a very large population of Cluster sufferers. Would you please mention this site to your patients involved in the implant procedure. Their firsthand reports would be invaluable to us. Thank you.

Dennis O'Connor
Episodic Clustheadache Sufferer and supporter of a Chronic Cluster Sufferer

I just received Dr. David Dodick's responce...

He said: "SURE THING"

We'll see...I hope that creep Jonny doesn't scare them off when they get here.

Good Grief
den

Title: Re: Is this new news?
Post by jonny on Oct 17^th, 2002, 4:38pm

My old man told me to find what you are really good at and do it hard , fast and the best you can.

Hmmmmmmm!!

.........................jonny

Title: Re: Is this new news?
Post by Bob P on Oct 21^st, 2002, 9:02am

From Dr. Dodick:

"Dear Mr Pahlow,

I very much appreciate your letter. I am currently lecturing at a meeting in Montreal and was speaking with Dr Robinson just last night. He spontaneously began to tell me about what a wonderful experience and privilege it was to speak to your group recently. It is a rare and invaluable experience indeed to have the opportunity to hear the experience of such a large group of cluster sufferers. Dr Robinson is a wonderful doctor and superb neurologist. I work closely with Genarro Bussone and Massimo Leone who I suspect you know. I look forward to the opportunity to work collaboratively with OUCH. It is just this type of collaborative effort that will bring us to better treatment and hopefully a cure for Cluster headache.

Best wishes,

David W. Dodick M.D.
Department of Neurology
Mayo Clinic
Scottsdale Arizona "

Title: Re: Is this new news?
Post by SteveY on Oct 22^nd, 2002, 4:16am

Now that Bob, is progress.

I know that OUCH(UK) meets on a regular basis with Goadsby.

Could that be duplicated in the U.S. with Dr Dodick or Robinson? It would provide excellent feedback via OUCH.

Steve

Title: Re: Is this new news?
Post by Riccardo on Oct 22^nd, 2002, 4:49am

This, Bob, are good news.

I will contact Doc. Leone as soon as possible, to know if he has news on this, and to know how close is the work between the Besta Institute (where Bussone and Leone work) and Dr. Dodick.

I will post some info as soon as possible

Title: Re: Is this new news?
Post by Bob P on Oct 22^nd, 2002, 8:29am

This is the note I sent him:

Dear Dr. Dodick,

I recently read with interest an article speaking of your research with
electrical stimulation of the occipital nerve. I just wanted to thank
you for your work in dealing with cluster headaches. Too often we feel
like the forgotten child, wondering if anyone is trying to help, as we
try to deal with the pain.

I also wanted to make you aware of our organization, The Organization
for Understanding Cluster Headaches, O.U.C.H. We are a non-profit
organization with the goal of becoming the most encompassing resource
for cluster sufferers. We have access to thousands of cluster
sufferers in our database. Surveys, some with responses from more than
11,000 clusterheads. Chapters in the UK, working with Dr. Goadsby and
also in Germany and Italy. Should you ever need access to sufferers,
we are more than anxious to help and would be at your disposal. We
would also be willing to host on our web site any research surveys or
announcements you would want.

That said, I wish you success with your upcoming symposium. Dr. Gordon
Robinson of Vancouver, who spoke at our annual meeting last month,
spoke very highly of you. I sincerely hope we can assist you in your
research in some way.

Sincerely,
~~~
Bob Pahlow, President
Organization for Understanding Cluster Headaches
www.clusterheadaches.org
~~~

Bussone, Leone and Dodick seem to churn out research papers often so they seemed like a good crowd to fall into. In addition, I think the Mayo Clinic caters to low income types. Could be a good resource for those sufferers without insurance. I think it's a relationship that OUCH should build on.

Hope you guys don't mind that I offered you all up as test subjects.

Title: Re: Is this new news?
Post by Charlie on Oct 22^nd, 2002, 5:42pm

That's nicely done and damn good letters. Nice work everyone.

Maybe we should keep things like this near the top so as not to scare off new board members. This is my lame contribution.

Charlie

Title: Re: Is this new news?
Post by Riccardo on Oct 23^rd, 2002, 5:05am

OK..... I have called Dr. Massimo Leone today.

He (obviously) confirmed me all the things that Dr Dodick said, about the close work between Mayo Clinic and Besta Institute of Milan.

The Dodick technique is close to the deeper Besta surgery because, instead of stimulate the hypotalamic section directly (Besta), Dr Dodick passes thru the occipital nerve to reach the same point. The action is not so "direct", but seems that the effects are good. Trigeminal nerve is used as a highway....

For absurd, you could put the electrode in your ..... (oh, don't mind.... ;D) and have the same (lessened) effect.
Hey, chronics.....DON'T put an electrical wire in your ear, hoping to lessen the pain...... is not so easy!!!! ::) ::) ::)

Dr Dodick have only experienced (not sure if now is still true) a bad side effect: seems that the infections chances are very high in his procedure, so he has to refine the technique.

Anyway, I think tha this may be the future, at least for chronics.

Ciao