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CJohnson
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Hypothalamus implant
« on: Jul 7th, 2003, 8:56am » |
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First I would like to apologize to anyone who was offended by remarks I made in a certain thread. I thought about it all weekend, and I was out of line. There are many valid reasons not to employ shroom therapy. Indeed, it is the strength of people who stand by their convictions in the face of severe adversity that made this country great. Such persons should be applauded, not criticized.
Secondly, I contacted the neurosurgeon, Dr. J. A. Brown, M.D., who wrote an article about the hypothalamus implant (stereotactic electrode implantation) which the Italians had so much success with, and this was his response.
Mr. Johnson,
There are other potentially beneficial surgical procedures for cluster migraine headache that are discussed in this paper and are done in the United States by qualified neurosurgeons including me. Only 11 patients in the world have had this operation which is considered experimental. There is no research protocol for this operation in this country.
Does anyone know if the Italians plan to use this procedure again?
Does anyone consider this a valid form of treatment for prophylaxis of chronic untreatable CH?
PFDANs
-Curtis
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Wendy the Brit
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Goadsby does consider it possible. He showed us an image of a brain during an attack, showing the side of the brain where the pain was -showed bright red, then the hypothalamus, with a bright red spot in the centre of it as well. This shows that not only is our hypothalamus abnormal, but that part of the brain also behaves abnormally during an attack This is where they place the hypothalamus implant to block the abnormal activity I think.
He said that this 'proof' of what is going on during an attack was going to prove very valuable in the future to 'hook' people into treating CH more seriously.
He seemed to be suggesting that although this new procedure is experimental, it has been very effective and an exciting possibility.
The video Jonny has/will have has the images and Goadsby's speech containing the implant stuff if you are interested. Also mught be worth asking about at the conference Don is attending perhaps??
W the B
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| « Last Edit: Jul 9th, 2003, 9:30pm by WendyHowe » |
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cathy
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Re: Hypothalamus implant
« Reply #2 on: Jul 7th, 2003, 1:02pm » |
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I am posting the tapes to Jonny tomorrow...I was hoping to get them onto disk, but im blonde so what do I know...anyway Jonny has offered to sort out the rest.
Apparently this procedure has been carried out 7 times successfully...apart from one of the 7 developing the pain on the other side...np...just repeated the procedure on the other side too. As Wendy said there is some info on the tapes.
Cathy
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Peppermint
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Re: Hypothalamus implant
« Reply #3 on: Jul 7th, 2003, 1:13pm » |
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O my goodness 
Cathy & Wendy... since you were there.. .you recall a post I put up on Uk ouch about the implant. I am certain I confused this implant with the occipital nerve stimulator implant. (Duh, especially since its called the HYPOTHALAMUS IMPLANT......  )
Just heard back that Dr. Dodick had only heard of 2 successes witht the occipital nerve stimulator implant (ONSI) for migrainers, not chronic ch patients, if we understood his letter correctly. I was baffled at this, until now, since in my discussions about the newest implant, I thought we were talking about the ONSI.
Please tell me the implant you are talking about is the newest one, that will probably make a big difference in my friend's upcoming approach to Dr. Dodick. I will try to get in contact with Mo, but if you have any info, I'd surely appreciate a post here.
Thank you ladies. 
Pepperoo
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Wendy the Brit
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Yes Pep, absolutely it is different. He did talk about the ONSI as well, but this hypothalamic implant is new and as Cathy says, so far 100% successful if you include the one person whose pain was cured on one side, then jumped ship to the other side and had to be done again. There were also no adverse events reported from the procedure either.
ONSI as far as I can gather has nowhere even approaching this kind of success.
W the B
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Peppermint
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Re: Hypothalamus implant
« Reply #5 on: Jul 7th, 2003, 1:27pm » |
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YES! YES!!! Thank goodness! I thought we got stonewalled again, it was very discouraging to get that letter from Dr. Dodick, since it appeared that there were no successes with CH.
Are Dr. Goadsby and Dr. Dodick working on this research together? That is what I originally understood, apart from the confusion of the two different procedures. Just want to be clear on that, if its to be discussed in the near future. There is a great deal of interest in this procedure for my friend, just trying to get more information about it, risks, costs, etc.
Seems like there is hope after all. And btw, he is back to square 1. Damned insurance. 
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When playing in the gym, beware of steel beams. - M. Amyx
Carve your name on hearts, and not on marble. - Charles H. Spurgeon
FYI - I am NOT a clusterhead.
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CJohnson
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Re: Hypothalamus implant
« Reply #6 on: Jul 7th, 2003, 1:29pm » |
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Here is a link to the implant article by Dr. Brown.
Link:
http://216.239.37.100/search?q=cache:Cn7r23CRCaYJ:www.neurosurgery.org/a ans/meetings/2003/731.pdf+cluster+headache+2003&hl=en&start=14&ie=UTF-8
Exerpt:
Results: At the last follow up (30.8 months) all patients were pain free without drug treatment. When the stimulator was switched off the typical attacks recurred; and when the stimulator was switched on the attacks disappeared again. No side effects (changes in arterial blood pressure, heart rate or skin temperature) were observed during intraoperative stimulation or during the post-operative course. All patients underwent postoperative PET scanning in on and off stimulation. Body temperature, arterial pressure and heart rate were monitored for 24 hours before and after the hypothalamic implant.
Broggi Giovanni MD
Franzini Angelo MD
Bussone Gennaro, MD
Ferroli Paolo, MD
Leone Massimo, MD
Dones Ivano, MD
Marras Carlo, MD
Discussant: Jeffrey A. Brown, MD
PFDANs
-Curtis
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Mark C
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Re: Hypothalamus implant
« Reply #7 on: Jul 7th, 2003, 1:44pm » |
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on Jul 7th, 2003, 1:29pm, CJohnson wrote:| Results: At the last follow up (30.8 months) all patients were pain free without drug treatment. |
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!!!!!!
I have not been PF for 30 months for the last 30 years!
Good stuff Curtis...and gang....thanks.
PS- Here is a related link.
"The hypothalamic stimulation treatment is a safe and effective alternative for treatment of drug-resistant chronic cluster headaches," said Angelo Franzini, MD, co-author of the study and an AANS member. "The procedure does not cause any of the unwanted side effects associated with surgical procedures."
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| « Last Edit: Jul 7th, 2003, 1:52pm by Mark C » |
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Peppermint
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Re: Hypothalamus implant
« Reply #8 on: Jul 7th, 2003, 1:46pm » |
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Thanks for the link Curtis, I'll forward that to my bud. Also, thank you Wendy & Cathy.
This really should be copied under the meds board... its an important topic. I was looking there, and lo and behold, here it was...... 
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When playing in the gym, beware of steel beams. - M. Amyx
Carve your name on hearts, and not on marble. - Charles H. Spurgeon
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CJohnson
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Re: Hypothalamus implant
« Reply #9 on: Jul 7th, 2003, 1:57pm » |
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Dr. Brown said that there is no research protocal for this procedure in the U.S. Maybe OUCH could get something going. Perhaps someone like Jill could benefit from this procedure. Especially if it was done as part of a research project (free). Is this any more extreme than a pin in your knee joint or an artificial hip? These are common and harmless today.
PFDANs
-Curtis
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BobG
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Re: Hypothalamus implant
« Reply #10 on: Jul 7th, 2003, 3:20pm » |
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Curtis...........the other thread is over and done.
Thanks for this one.........very interesting and important information.
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Azrael
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Re: Hypothalamus implant
« Reply #11 on: Jul 7th, 2003, 3:21pm » |
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CJ... From what I've read, the proceedure is as risky as any other brain surgery.
PFDAN................................. Drk^Angel
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Wendy the Brit
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Dark Angel
No interventions into the brain are risk free and you are right to highlight this. One of the interventions discussed at our conference had resulted in some very serious adverse events in a substantial proportion of people including meningitis and one death.
From what we heard though, the hypothalamic implant was not cosidered to be as high a risk procedure.(certainly wouldn't call anything like that similar to an knee of hip surgery though)
W the B
P.S. Pep, Goadsby isn't pioneering this,the Italians are, he was giving us an up to date state of play on Cluster Headache develpoments everywhere in the world.
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Azrael
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Re: Hypothalamus implant
« Reply #13 on: Jul 7th, 2003, 8:34pm » |
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on Oct 1st, 2002, 8:24am, Riccardo wrote:****** NOTE*******
this answer explain the Doc. Leone (Italy) procedure for CH. Have nothing to do with the occipital nerve blockage....... Sorry
****************************************
Actually there are 8 implants (7 patients...1 with 2 implants - bilateral) in Italy.
One of the patient is Spanish. Last patient (an OUCH Italia female member) have had surgery last week.
In few words, they surgically insert an electrode in the middle of your hypothalamus, and connect it with an electric battery. The battery has a switch.
Seems that the electrical stimulation blocks the process of a CH attack.
ALL patients are pain free from the surgery, and 4 of these have had the electric "supply" disconnected (means they are P.F. without ANY meds or device)
The success is then 100%
But....there is always a but.....
- The operation have the same risk of a brain aneurysm surgery (this means high.... you have some.... few, OK ... possibilities to remain on a wheelchair..... without CH)
- They DON'T KNOW WHY it function (Sorry Doc Leone.... but is near the truth...... ) . It was a try, and a lucky try. They simply repeat the operations they did with the 1st one.
-Due to the risks, you have to be a chronic, with difficulties in meds treatment to have this operation
-The surgery (at present) can be done only in Italy.
Doc Leone have had some contacts with Doc Goadsby (UK) and with some Clinics in New York, but no definition at present.
Hope I have answered your questions (despite the bad English)
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Here's one of the best explainations of the proceedure and the possible risks that I've been able to find (Thank you Riccardo!).
I didn't mean for my above post to sound like the proceedure is a bad idea. I just meant to highlight that it's a bit more risky than knee or hip surgery. I think this proceedure shows great promise in both a treatment for, and source for greater knowledge of, cluster headaches. I hope that the research down this avenue continues and is expanded.
PFDAN.................................... Drk^Angel
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TraceaTX
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Re: Hypothalamus implant
« Reply #14 on: Jul 7th, 2003, 9:51pm » |
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Hi! i am back..... I just want to know how I can get to Italy!!!
Tracea
Still in the middle of cluster-ville with no end in sight.
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Mike_P
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Re: Hypothalamus implant
« Reply #15 on: Jul 9th, 2003, 3:28pm » |
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Wendy, Sorry to take issue with you regarding Prof. Goadsby's plans but I went to the meeting in Birmingham and he never once mentioned “doing” The Deep Brain Stimulation operation. I spoke with him today and he apologises if you misunderstood his comments but he is only planning The Occipital Nerve Stimulation at present. He feels that the Deep Brain Stimulator is too invasive to attempt in the immediate future without exploring all the possibilities of the much less risky Occipital Nerve Stimulator procedure.
Regards
Mike P
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Wendy the Brit
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MIKE P
You are the one who has misunderstood, not me. I was listening very carefully to everything he said and I say very clearly above (see the post to Pep) that Goadsby is not DOING the implants and that it is the Italians pioneering it. He was reporting new developments in CH treatment to us at the conference, and I say this very clearly above as well.
I heard and understood very clearly which invasive procedures he felt were the most risky, I remember clearly his stats about the adverse events associated with the procedures you mention, hence the reason for me posting in support of Dark Angel's post about the dangers.
I am very put out that you have seen fit to feed back your own misunderstanding to Professor Goadsby as he may think twice about telling us so much in the future if he thinks we don't understand.
I have reread what I posted above and it is still beyond me how you have interpreted what was written as me saying that Professor Goadsby was carrying out these procedures. No-one else misunderstood as far as I can see, why would Tracea want to go to Italy if she hadn't understood that that is where the pioneering is being done?
I would know like to know what you think should be done to repair any damage caused by this?
Looking forward to your response
Wendy the Brit
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Mike_P
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Re: Hypothalamus implant
« Reply #17 on: Jul 9th, 2003, 4:54pm » |
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Wendy,
There is some ambiguity about your posts, if you are saying in your earlier posts that Prof. Goadsby is doing the Occipitial Nerve Stimulator, i.e. the one which has been done by David Dodick where the stimulator wire is inserted at the back of the neck whilst under local anaesthetic followed by a pacemaker type appliance under the collar bone which is done under general anaesthetic. A remote control is used to increase the voltage to the hypothalamus I apologise. Perhaps you would clarify.
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Wendy the Brit
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Help me out here folks, I do not think I have said anywhere ANYTHING about procedures being carried out in the UK, I have clearly stated that we were being briefed about developments around the world and suggesting that if people are interested they should watch Cathy's video of the speech and the slides.
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Mike_P
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Re: Hypothalamus implant
« Reply #19 on: Jul 9th, 2003, 5:10pm » |
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Can you answer my question?
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Mike_P
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Re: Hypothalamus implant
« Reply #20 on: Jul 9th, 2003, 5:22pm » |
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Wendy, having reread your earlier posts you state “From what we heard though, the hypothalamic implant was not cosidered to be as high a risk procedure.(certainly wouldn't call anything like that similar to an knee of hip surgery though)” Drilling into the brain is always considered high risk. The operation described in my earlier post is the low risk one.
Mike P
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Wendy the Brit
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What is your problem Mike?
This is using up board space causing confusion to others where there wasn't any before. I have checked with a few people and no-one else has misunderstood.
Take it to private message before you confuse things even further.
Wendy
Amended as you other post appeared after I had posted this.
If you feel people are so confused, I suggest that to put this right, you do a neat summary here of the presentation on Invasive procedures so that no-one can be confused any more if you think they are
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| « Last Edit: Jul 9th, 2003, 5:32pm by WendyHowe » |
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jonny
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Yeah Mike,
Take it to private message or I will be forced to behead you for taking up space with your argument.
.........................King jonny
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Wendy the Brit
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Right then folks
If you are confused as Mike thinks here is a quick summary. There are three procedures being described here. I did not state that any of them are being carried out here but if you are interested (and I doubt you are as if you were in the UK you would know) ONSI is used here.
N.B. All interventions into the brain carry a level of risk, some are higher risk than others
ONSI- Occipital Nerve Stimulator Implant. - widely used and reported. Many archive posts here about if you are interested. Lower risk as relatively non-invasive as it stimulates external nerve (i.e. the implant is not placed deep into the brain itself).
Hypothalamic Implant- Being pioneered in Italy (see above posts for details) Early success being reported (see above again) but in experimental stage only. Invasive neurosurgery so risk involved as the implant is inserted into the hypothalamus itself, but no adverse events reported to date.
Other neurosurgery (as opposed to ONSI or implant). This was mentioned but has not been discussed in the posts above. The reason for this is that various procedures have been undertaken and have resulted in serious adverse events such as meningitis and in one case death has resulted.
Is this clear now? If not please tell me and I will rewrite it
W the B
And if it wasn't abundantly clear (which I think it was) Professor Goadsby was REPORTING the invasive procedures, not advocating them or carrying them out.
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| « Last Edit: Jul 9th, 2003, 7:16pm by WendyHowe » |
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Mike_P
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Re: Hypothalamus implant
« Reply #24 on: Jul 10th, 2003, 2:26pm » |
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Firstly my message to King jonny (sic), whoever you may be. As America is supposed to be the land of free speech how do you reconcile your threat to cut me off with the acceptance of Wendy’s messages? Double standards?
To Wendy, as I have more knowledge of the procedure of Occipital Nerve Stimulation for Cluster Headache than probably all but two people in the U.K. I feel I am entitled to give an opinion. This is not “widely used” please get your facts correct. How many procedures have been done, give me your best estimate as to how many have been done in the U.K.
You have also said that there are three neurosurgery procedures for Cluster Headaches, oh really, perhaps you would advise us all of the third.
I have had numerous messages today from people saying they agree with my comments, your statements are both confusing and inaccurate.
You are famous for your outspoken and sometimes rude comments on the U.K. Ouch site, I didn’t realise that you exported them to The U.S.A.
This is the last message I will post on the site, given the vitriol I have received from you
Mike P
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