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Topic: Deep Brain Implant to treat cluster ha's (Read 1702 times) |
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neuronurse
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Deep Brain Implant to treat cluster ha's
« on: May 18th, 2005, 7:16pm » |
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I work with Dr. Philip Starr, a Board Certified Functional Neurosurgeon. He has successfully implanted deep brain stimulation devices in patients with cluster headaches. THis has dramatically improved their symtpoms! The largest series for this type of surgery has been done in Milan, Italy. Using their coordinates he implants one deep brain lead into the hypothalamus. The lead is then connected to a pacemaker of sorts, all tunneled under the skin. This pacemaker is then programmed to 'dial out' the pain. I am involved programming these stimulators and want to spread the word to those who might be interested in this. It is an awake brain surgery - but Dr. Starr has done this type of surgery on many diagnoses and in over 500 pts at the Univ. of California, San Francisco and at the SF VA Hopital. If interested, please email me directly with questions. susan.heath@med.va.gov
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Jonny
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Re: Deep Brain Implant to treat cluster ha's
« Reply #1 on: May 18th, 2005, 7:40pm » |
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Is it free?
And could you posts some links about some of his surgeries?
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| « Last Edit: May 18th, 2005, 7:42pm by Jonny » |
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
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broomhilda
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Re: Deep Brain Implant to treat cluster ha's
« Reply #2 on: May 18th, 2005, 7:46pm » |
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on May 18th, 2005, 7:16pm, neuronurse wrote:| but Dr. Starr has done this type of surgery on many diagnoses and in over 500 pts at the Univ. of California, San Francisco and at the SF VA Hopital. If interested, please email me directly with questions. susan.heath@med.va.gov |
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Many diagnoses? Like different headache types or diagnosed with ch? 500 sounds extremely high, are there patients feedback for us to view as well as what Jonny requested?
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| « Last Edit: May 18th, 2005, 7:47pm by broomhilda » |
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neuronurse
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Re: Deep Brain Implant to treat cluster ha's
« Reply #3 on: May 18th, 2005, 7:49pm » |
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Dr. Starr takes ALL types of insurance. In California, even Medi-Cal (state-sponsored insurance) is accepted. If you are a Veteran, you can receive this for free if you are eligible.
The cost to the Insurance companies is about 50K.
To learn about the basic DBS implants (FDA approved for Parkinson's, Essential Tremor and Dystonia patients) go to the Medtronic web site:
www.medtronic.com/neuro/parkinsons/activa_qa.html
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vig
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Re: Deep Brain Implant to treat cluster ha's
« Reply #5 on: May 18th, 2005, 8:06pm » |
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No thank you Dr. Frankenstein...
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| « Last Edit: May 18th, 2005, 8:06pm by vig » |
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Jonny
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Re: Deep Brain Implant to treat cluster ha's
« Reply #6 on: May 18th, 2005, 8:19pm » |
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Why is it that I do not see CH even mentioned on the home age?
Ill have my landscaper work a weed whacker on my head before I deal with this dude.
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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broomhilda
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Re: Deep Brain Implant to treat cluster ha's
« Reply #7 on: May 18th, 2005, 8:40pm » |
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Somehow this looks more appealling...
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E-Double
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Re: Deep Brain Implant to treat cluster ha's
« Reply #8 on: May 18th, 2005, 8:45pm » |
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Are there any real statistics regarding the efficacy of such procedures......
It appears that those who have had to have surgeries for their CH get a relatively short period of relief or it morphs and just attacks the other side......
I have read the study conducted in Italy but I would like to see larger stats despite never considering such a drastic procedure for myself.
Regards,
E
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| « Last Edit: May 19th, 2005, 8:07am by E-Double » |
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Jonny
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Re: Deep Brain Implant to treat cluster ha's
« Reply #9 on: May 18th, 2005, 8:53pm » |
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Fuckin bitch dont know who shes dealing with......LMMFAO 
From: Heath, Susan L.
Date: 05/18/05 21:00:39
To: 'jonny'
Subject: RE: Cluster headaches
Oh, I can accept this. Perhaps if a patient who has had this says otherwise, you might be less mistrustful?
Susan Heath, RN, MS, CNRN
Movement Disorder CNS
Parkinson Disease Research Education Clinical Center (PADRECC)
San Francisco VA Medical Center
415-379-5530
-----Original Message-----
From: jonny [mailto:jonnymule@comcast.net]
Sent: Wednesday, May 18, 2005 5:57 PM
To: Heath Susan L.
Subject: RE: Cluster headaches
Ive been chronic for 30 years and I would rather stay on my meds then let you freaks work on my brain....you will gain NO friends at CH.COM.......Get use to it!
-------Original Message-------
From: Heath, Susan L.
Date: 05/18/05 20:52:54
To: 'jonny'
Subject: RE: Cluster headaches
There have been some pretty funny responses. Dr. Frankenstein, weed wacker preferred to brain surgery. I wonder if they only knew that it has improved some people's life and kept them from feeling suicidal! IT is not a guarantee, but it has "decreased symptoms in most but not all patients." Works better than drugs!
Susan Heath, RN, MS, CNRN
Movement Disorder CNS
Parkinson Disease Research Education Clinical Center (PADRECC)
San Francisco VA Medical Center
415-379-5530
-----Original Message-----
From: jonny [mailto:jonnymule@comcast.net]
Sent: Wednesday, May 18, 2005 5:21 PM
To: Heath Susan L.
Subject: RE: Cluster headaches
Thanks again.
Jonny
-------Original Message-------
From: Heath, Susan L.
Date: 05/18/05 20:17:48
To: 'jonny'
Subject: RE: Cluster headaches
I posted on the web site his UCSF link. He can be 'googled' - just put in Philip Starr, DBS (for deep brain stimulator) and you will see many items on him. He is one of the top DBS neurosurgeons in the Country. Really.
Susan Heath, RN, MS, CNRN
Movement Disorder CNS
Parkinson Disease Research Education Clinical Center (PADRECC)
San Francisco VA Medical Center
415-379-5530
-----Original Message-----
From: jonny [mailto:jonnymule@comcast.net]
Sent: Wednesday, May 18, 2005 4:57 PM
To: susan.heath@med.va.gov
Subject: Cluster headaches
Could you please send me any Internet links to anything this doc has done?
Thank you
jonny
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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nani
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Re: Deep Brain Implant to treat cluster ha's
« Reply #10 on: May 18th, 2005, 8:57pm » |
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Um, I think I'll pass...
I've had brain surgery and it kinda makes CH feel like a walk in the park. Stay outta my grey matter, please...
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neuronurse
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Re: Deep Brain Implant to treat cluster ha's
« Reply #11 on: May 18th, 2005, 9:02pm » |
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I understand why many of you feel skeptical. The previous medical/surgical attempts to help CH have been, say, less than exciting and usually disappointing.
This procedure IS not FDA approved for CH, but it IS approved for the other three diagnoses I mentioned above, and is being actively researched for this problem, as well as Tourettes. So, this IS experimental, so is not for the faint hearted. However, much has been done with electrical 'jamming' of the brain's abnormal signals for other serious progressive neurological disorders. It does sound pretty out there, I must admit. This is definately new territory. No need to justify why any of you would not wish to have awake brain surgery. I will ask the patients who have had this surgery to post their opinions. Again, we only are trying to alert those with this debilitating problem that there are options. The major risks are stroke from the surgery, 3%, and infection 3-5%. The benefit is a 95-97% chance of getting better. Information only.
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broomhilda
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Re: Deep Brain Implant to treat cluster ha's
« Reply #12 on: May 18th, 2005, 9:05pm » |
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on May 18th, 2005, 9:02pm, neuronurse wrote: The major risks are stroke from the surgery, 3%, and infection 3-5%. The benefit is a 95-97% chance of getting better. Information only.
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This inaccurate as you are posting for other debilitating disorders and not for ch, therefore your stats are incorrect and unfounded.
edit to add has this experimentation been done on ANY patients with ch?
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| « Last Edit: May 18th, 2005, 9:05pm by broomhilda » |
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sandie99
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Re: Deep Brain Implant to treat cluster ha's
« Reply #13 on: May 18th, 2005, 9:12pm » |
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I think MRI scan was enough of brain peeking for me...
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Karla
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Re: Deep Brain Implant to treat cluster ha's
« Reply #14 on: May 18th, 2005, 9:39pm » |
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I would try it But can't afford travel expenses at this time. Keep up the good work. At least your researching and trying to help us. If I recall it did help those in Italy.
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Karla
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kcopelin
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Re: Deep Brain Implant to treat cluster ha's
« Reply #15 on: May 18th, 2005, 9:40pm » |
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I have to tell y'all-this scares me! I happen to get my medical treatment through the VA and I'm gonna be really freaked if they expect me to do this! One of the images I use while trying to outrun the beast is surgical removal of my brain-not that I really want that to happen-I just want the pain to stop. However, from everything I've read, the odds are really against this procedure working for clusterheads- one of the infuriating things about clusters is that they stop suddenly and you have no idea if it was something you did or whether it was just time. Seems that there may be an over abundance of grey matter in the hypothalimus in clusterheads-I'm not convinced that stimulating that would be good. Thanks for your input though.
Kathy
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kissmyglass
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Re: Deep Brain Implant to treat cluster ha's
« Reply #16 on: May 19th, 2005, 12:25am » |
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Hey peeps please don't scare this lady away, DBS may be my last hope....I would do it, I'm out of options, but I have no ins. I have to start begging Medtronic to give me one of those stimulators. I have a doc to install it....
Kev
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Mr. Happy
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Re: Deep Brain Implant to treat cluster ha's
« Reply #17 on: May 19th, 2005, 12:39am » |
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I agree with you, Kev, and I got your six. You got first.
Have read one or two of the Milan digests, at best. In one of the tests with 6-8 subjects, one subject kinda died from a "leak" in his brain. The rest of the folks fared pretty well. I'm sure there were other tests........and that's what we'd like to see, Neuronurse. I'm glad you brought Doc Starr to our attention, glad it's being done in the US, and glad you can provide us with details upon request.
Most here, like Kev, look on this as a last resort. Me too. You'll pardon the group if we can find a less invasive way of coping, instead of looking at this procedure as a first step choice.
Thanks for your input! Hope you'll stay and answer the local native's questions.
There's gonna be a lot of them.
RJ
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Bionic_Daddy
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Re: Deep Brain Implant to treat cluster ha's
« Reply #18 on: May 19th, 2005, 2:48am » |
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Neuronurse & all sufferers,
I am the first D.B.S. patient in Los Angeles. I've been CHRONIC for 5 years with kip 9-10's daily. Tried every med. availible, they only work for a SHORT TIME. Imetrex, Amerge, DHE, Frova, Maxalt, Verapimil, Lithium etc. O2 & Prednisone were my only support. My Chronic HA'S have decreased in pain by 2/3rds and getting better. The surgery was WELL worth my relief! Yes, this surgery is NASTY. The night after surgery was not as painful as the BEAST for days on end. Was this 15 hours of surgery worth it, Yes for me. I am finally starting to enjoy my life & enjoy my family again! This surgery is still experimental & so is the programming. My Doc. & I are still fine tuning the stimulator.
Bionic Daddy
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Sean_C
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Re: Deep Brain Implant to treat cluster ha's
« Reply #19 on: May 19th, 2005, 8:10am » |
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Neonurse should donate this to anyone here who needs it Kev. Lets see, 50 chronic dontions for free, 8000 members ch.com @ 50K a piece = 400,000,000 in gross sales if it worked. What do you think neoronurse, make it happen.
Sean...............................
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vig
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Re: Deep Brain Implant to treat cluster ha's
« Reply #20 on: May 19th, 2005, 9:27am » |
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hmm
let me see....
DBS or clusterbusters.....
to me that's a no-brainer.
Now, if CB doesn't work, go for it, but it's hard for me to imagine, you'll open yourself up to the risk of death or brain damage, but not try the alternatives first. (and there are now several safe alternatives to try first)
I know we're all desperate
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kissmyglass
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Re: Deep Brain Implant to treat cluster ha's
« Reply #21 on: May 19th, 2005, 9:34am » |
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As I said Paul..."I am out of options"....sucks
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Bob P
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Re: Deep Brain Implant to treat cluster ha's
« Reply #22 on: May 19th, 2005, 9:42am » |
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This is really only an otion for chronic sufferers. Here's the article from the Italians in the OUCH Library (you guys should read it sometime).
http://www.clusterheadaches.org/library/hypothalamus/wire_in_brain.htm
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vig
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Re: Deep Brain Implant to treat cluster ha's
« Reply #23 on: May 19th, 2005, 9:44am » |
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sorry, Kev.
I figured you HAD tried them, and I'm truly bummed for you. and Karla too.
But they'll take on unsuspecting people who haven't given the safer alternatives a try under the pretense that neuros know better. and they're WILL be accidents and they'll say "whoops sorry". It wasn't all that long ago when medicine was recommending the unanaesthetized ice pick between the eyes for schizophrenia, when chemicals can keep it safely at bay.
I'm all for DBS as a last ditch effort.
sad... we have to make tough CHoices.
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Re: Deep Brain Implant to treat cluster ha's
« Reply #24 on: May 19th, 2005, 9:47am » |
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I remember when this was first tried in Milan, Italy and Riccardo talking about this. I know there was a study and follow-up on the clusterheads that had this done and the success rate WAS really quite high. I'm sure OUCH Italy has more info on this over at their website. Riccardo - where ARE you, Mr. Garlic Kisser? We need your knowledge here!!
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