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Topic: Is this new news? (Read 475 times) |
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Jabeen
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Is this new news?
« on: Oct 12th, 2002, 7:31pm » |
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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
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Mark C
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Re: Is this new news?
« Reply #1 on: Oct 12th, 2002, 8:30pm » |
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Wow.
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Ree
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Re: Is this new news?
« Reply #2 on: Oct 12th, 2002, 9:41pm » |
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sounds scarey 
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Marc
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Re: Is this new news?
« Reply #3 on: Oct 12th, 2002, 10:58pm » |
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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.......
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| « Last Edit: Oct 12th, 2002, 10:59pm by Marc » |
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2late
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Re: Is this new news?
« Reply #4 on: Oct 13th, 2002, 9:25am » |
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If it work's count me in! ...........2late
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catlind
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Re: Is this new news?
« Reply #5 on: Oct 16th, 2002, 4:19pm » |
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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
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Ted
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Re: Is this new news?
« Reply #6 on: Oct 16th, 2002, 4:49pm » |
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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.
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jonny
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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
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echo
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Re: Is this new news?
« Reply #8 on: Oct 16th, 2002, 5:03pm » |
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Jonny in a tutu -- now thats a sobering thought.
Question is -- does he have the legs for it? ;D
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"If you love something, let it go. If it doesn't come back, hunt it down and kill it".
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jonny
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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
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| « Last Edit: Oct 16th, 2002, 5:34pm by jonny » |
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ShariRae
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Re: Is this new news?
« Reply #10 on: Oct 16th, 2002, 9:27pm » |
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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
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catlind
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Re: Is this new news?
« Reply #11 on: Oct 17th, 2002, 7:14am » |
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Well I've seen a picture that says Jonny would look just fine in a tutu...or a girdle... 
ROFLMAO
Cat
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A true friend is someone who reaches for your hand and touches your heart
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Ree
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Re: Is this new news?
« Reply #12 on: Oct 17th, 2002, 7:25am » |
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Nope me thinks jonny doesnt need a girdle... nor a tutu havent decided what he needs yet... giggle ree
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Proud Mom to US ARMY Kiowa OH58 PILOT~CWO2 SCOTT Hawaii, & USMC Vet~Now POLICE OFFICER SEAN, Citizen of the Month~ Breezy~ Nana 4 Matt/Mike&Aya, MIL To Shino Wife to Dave HI BILL!http://www.myspace.com/dungareespockethttp://www.prohawaiian.com
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echo
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Re: Is this new news?
« Reply #13 on: Oct 17th, 2002, 10:00am » |
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Go for it jonny. Now we know what to get jonny for Christmas. A red tutu with white feathery fringe. ;D
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"If you love something, let it go. If it doesn't come back, hunt it down and kill it".
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Georgia
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Re: Is this new news?
« Reply #14 on: Oct 17th, 2002, 4:22pm » |
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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
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jonny
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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
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Bob P
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Re: Is this new news?
« Reply #16 on: Oct 21st, 2002, 9:02am » |
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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 "
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Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
"SHUT UP HUB!"
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SteveY
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Re: Is this new news?
« Reply #17 on: Oct 22nd, 2002, 4:16am » |
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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
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Riccardo
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Re: Is this new news?
« Reply #18 on: Oct 22nd, 2002, 4:49am » |
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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
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Riccardo OUCH-Italia
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Bob P
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Shut up Bob!
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Re: Is this new news?
« Reply #19 on: Oct 22nd, 2002, 8:29am » |
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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.
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Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
"SHUT UP HUB!"
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Charlie
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Re: Is this new news?
« Reply #20 on: Oct 22nd, 2002, 5:42pm » |
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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
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Riccardo
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Re: Is this new news?
« Reply #21 on: Oct 23rd, 2002, 5:05am » |
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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
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| « Last Edit: Oct 23rd, 2002, 5:07am by Riccardo » |
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Riccardo OUCH-Italia
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