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Title: New on PubMed today Post by cluster on Jun 15th, 2007, 6:41pm Quote:
Source: http://www.ncbi.nlm.nih.gov/sites/entrez?db=PubMed pf wishes, Friedrich |
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Title: Re: New on PubMed today Post by thebbz on Jun 15th, 2007, 8:33pm Thanks for the info. jb |
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Title: Re: New on PubMed today Post by George_J on Jun 15th, 2007, 9:25pm Thanks, Friedrich. Interesting material. Best, George |
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Title: Re: New on PubMed today Post by Pinkfloyd on Jun 16th, 2007, 1:39am "At the I-year follow-up examination, DBS had produced a greater than 50% reduction in headache intensity or frequency in two of four cases\." Whoopdy-freakin-doo!! Ben's Clustermasx has better results than that and it doesn't involve brain surgery. Thanks Friedrich. Looks like they're going to keep "playing around" with this until another clusterhead dies. I have to wonder about the ethics of some of these doctors/researchers when they go trolling for patients willing to undergo surgical procedures like this when they know they haven't exhausted ALL other less risky treatments. I'd be very interested in seeing a complete list of what these 4 people have tried over the years and see what the people on this site could offer that would have also cut 2 of their attacks by 50%....free of charge and leaving no holes in their skulls. >:( Bobw |
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Title: Re: New on PubMed today Post by UN solved on Jun 16th, 2007, 2:05pm So, 50% of them had a 50% reduction of symptoms. That doesn't sound too good to me. Like Bob points out, I'd rather try alot of other stuff before I tried something like that. PS. What happened to the 50% that didn't benefit ? Did they get worse ? UNsolved |
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Title: Re: New on PubMed today Post by klusterkopf on Jun 16th, 2007, 3:28pm The Belgiums performed 5 DBS operations, one patient died due to post-op intracranial bleeding (2004) and they stopped performing the operation. The Germans performed 2 DBS operations for chronic CH in 2005-2006. both failed. The Italians have performed 40+ of these operations, claiming a 90% success rate, i.e., no more CH attacks after at least 2 years, but no MDs in Europe bellieve their stats. I believe that several were performed in the US with, perhaps, 1 success-short term, the long term results are not known. The operations are very expensive, about $125,000 each and are not covered by insurance as the FDA considers them experimental. Unless you can get it done for free, I would wait before undergoing such a drastic procedure. Mein zwei Pfennig. Sei vorsichtig! |
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Title: Re: New on PubMed today Post by LeLimey on Jun 16th, 2007, 4:07pm on 06/16/07 at 15:28:27, klusterkopf wrote:
You won't be deleting THAT post John For the benefit of anyone new reading this klusterkopf is our resident troll. He has been here and been banned more times than most of us can remember because of his ridiculous claims and his offensive posts. He has stated he doesn't have CH and he has also stated on many occasions that he has had the DBS surgery. He wouldn't know the truth if it jumped up and bit him. His advice is unsound and frankly dangerous and the best advice we can give you is to ignore him. |
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Title: Re: New on PubMed today Post by medic1852 on Jun 16th, 2007, 4:38pm on 06/16/07 at 15:28:27, klusterkopf wrote:
Scheiße essen und sterben du wertloses troll wir benötigen nicht oder wünschen deinen Rat! ::) Rodger |
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Title: Re: New on PubMed today Post by Linda_Howell on Jun 16th, 2007, 6:32pm Except for his terribly offensive posts pm's and e-mails to you Helen and others here, especially women, the fact that what he says is lies, his worthless information and dangerous posts to newcommers, I'd say he is just one fine guy. NOT Begone John |
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Title: Re: New on PubMed today Post by Redd on Jun 16th, 2007, 6:50pm Regarding your post, John, I just wanted to add a link in "reference" to what you have proposed. http://archive.ucimc.org/usermedia/image/7/large/stfu.JPG |
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Title: Re: New on PubMed today Post by Gator on Jun 17th, 2007, 12:51am It seems we clusterheads have a tendency to bite the hand that tries to feed us at times. None of the surgeries to date make me want to run out and have them done, but I don't think we should condemn science for trying. Everything the researchers try, even (or maybe especially) the unsuccessful treatments, adds to the understanding of CH and bring us that much closer to a viable treatment. I agree more researchers need to take a closer look at the alternatives, but I don't want everyone to drop what they are doing and focus solely on them. The more things being tried, the better chance of finding something that works for everyone. |
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Title: Re: New on PubMed today Post by UN solved on Jun 17th, 2007, 3:37am I agree with Mike's post. I don't 'condemn' docs for trying. I just hope that the patients they select have tried most everything else and are fully informed about the possible consequences, so that they can make an 'informed' decision. Both, my local neuro and Dr. Rozen have said that side effects from some of these 'procedures' could equal to a 24/7, non-stop CH attack. What happens to these people? I'd rather be dead !! Goodluck and godspeed to those who choose to do so UNsolved |
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Title: Re: New on PubMed today Post by E-Double on Jun 17th, 2007, 9:38am Ditto Mike and Mike |
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Title: Re: New on PubMed today Post by Pinkfloyd on Jun 17th, 2007, 3:19pm on 06/17/07 at 00:51:34, Gator wrote:
Mike, I have no argument with what you said. I agree and I guess I am trying to bite back...but... The morbidity rate on open brain surgery is about 1%. One out of 100 will die on the table. Whether it is from hemmorage, anesthesia problems, infection, etc..... My problem is that some of these doctors are trying to treat clusters with their specialty, even if it isn't the next best option. Go to a Neurosurgeon and he will come up with an operation that he says is the best option. Go to a Nutritionalist and they'll put you on a diet that will "do the trick." Not withstanding the fact that they may have very little knowledge about clusters or the complicated "mess" we find ourselves in. An example came up just this week that I reported to the other clusterbusters. A young women was in very bad shape with chronic clusters. (very bad shape) She saw two "top" neurologists in Tx. "headache specialists" To make a long story short..... They put her on oxycontin and then tried Sansert which had worked for her in the past. Things got progressively worse. :'( Dr. 2 upped the oxy. :-/ Sansert still had no effect. :-X Their next options were; 1) Trigeminal nerve rhizotomy. 2) ONSI She was told she must not have enough serotonin receptors in her brain and surgery was her only option. She was told that if sansert didn't work, she was at the end of the road with prescription medication options. She was told that if she tried psychedelics, she'd be cut lose from further treatment. She was told that she should donate her brain to science when she dies. >:( You know why the Sansert didn't work? The answer can be/was, found on clusterbusters FAQ..... She then went to see a "real" expert on clusters, Dr. Matthew. He detoxed her off the oxy.......and the Sansert worked. Sansert is very close to psilocybin and LSD. Narcotics block the action of psychedelics. Dr. Matthew knew this. As I said before, there's 100 people here that knew that. The girl is cluster free and still has all her nerves in tact and can still walk through the metal detectors at the airport without a problem. As you know Mike, I am all for research. I just question the motives, tactics and patient selection of some of them. Bobw |
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Title: Re: New on PubMed today Post by Gator on Jun 17th, 2007, 8:58pm I agree with you, Bob. Some of these doctors are making decisions on outdated and/or insufficient information and others are making them with their wallets. Either way, it's the patient that loses. There needs to be some serious changes in doctor and patient education in the area of CH. The major headache organizations of the world are focusing mainly on Migraine. The National Headache Foundation has had two (2) articles dealing with CH in the last 2 years - one in 2005 and one this year. From what you can see of the World Headache Alliance online, that organization is essentially dead. To look at achenet.org, ACHE should change it's name to the American Headache Society's Council for Migraine Education. The Cluster Headache organizations world-wide have a duty to work together and educate the medical, insurance and pharmaceutical industries as well as the general population. |
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