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Title: Occipital Nerve Stimulation Transplant Post by Iain Nicol on Jun 21st, 2005, 7:50am A friend read about this in the paper recently - I've started to research it as a possibility for us clusterheads., but as a shortcut - anyone know if it's been tried on clusters before? Is it worth pursuing? Granted its a recent thing - Medtronic announced trials in 2004, but it might be good for us. Also, i read somewhere that LSD is being researched in the US - anyone tried this yet? |
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Title: Re: Occipital Nerve Stimulation Transplant Post by Bob P on Jun 21st, 2005, 9:34am The occipital nerve stimulation procedure is being done by Dr. Dodick at the Mayo Clinic in Scottsdale Arizona. http://www.clusterheadaches.org/library/surgery/occipital_stim.htm |
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Title: Re: Occipital Nerve Stimulation Transplant Post by nani on Jun 21st, 2005, 9:42am on 06/21/05 at 07:50:17, Iain Nicol wrote:
Look here on the Medications board for info on psilocybin (mushrooms), and LSA. Most of the threads that say "alternative" will have info on this. Harvard is collecting case studies on folks who have been helped by psilocybin. The hope is that the studies will preceed an actual clinical trial. There are quite a few members here who can offer you a great deal of info and help with this. good luck and pain free wishes, nani |
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Title: Re: Occipital Nerve Stimulation Transplant Post by vig on Jun 21st, 2005, 11:18am It's my opinion that people should try the medicinal alternatives before resorting to the surgeries. |
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Title: Re: Occipital Nerve Stimulation Transplant Post by unsolved1 on Jun 21st, 2005, 11:33am Occipital Nerve Stimulation is also being done in Michigan by Dr. Rozen's team (Dr. Rogers) from MHNI. I had it done in March of 04' but it didn't help me. Unsolved |
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Title: Re: Occipital Nerve Stimulation Transplant Post by LeLimey on Jun 21st, 2005, 12:03pm Several people in the UK have had it done at the Institute of Neurology in Queens Sqare including two clusterheads to my certain knowledge (maybe more) with another of my friends on OUCH UK set to have the operation as soon as the paperwork is all in order If you contact OUCH UK they can give you all the details and you can chat to people who actually have had the op and can give you their experiences first hand. Hope this helps! The ouch UK website is http://www.clusterheadaches.org.uk/home/index.cfm?address=../home/txt_welcome.cfm&added=Dec2001&code=AD Take care Helen |
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Title: Re: Occipital Nerve Stimulation Transplant Post by burnt-toast on Jun 21st, 2005, 1:27pm It is frequently noted that surgical options should be a last resort reserved for chronic suffers who are not resonding to medications. (At least at this time because most surgical procedures are very new) Medtronic Inc. developed impants in the early 70's and tested them into the 90's on more serious neurological conditions such as Parkensons. Occipital implant trials for the treatment of Occipital Neuralgia began in the early 90's and the most recent trial (that I could find) - one Migrane patient in Sept./Oct. 2004. I have not found reference to Cluster Headache trials at this point. Occipital Neuralgia trials show encouraging results but additional trials and assessment of long-term results are still being conducted. As indicated Migrane trials are too new/limited to determine their effectiveness. Quote:
Hope some of this helps. Tom |
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Title: Re: Occipital Nerve Stimulation Transplant Post by Iain Nicol on Jun 22nd, 2005, 9:33am thank you all very much for this. When i get more info, i'll pass it on Iain |
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Title: Re: Occipital Nerve Stimulation Transplant Post by LeLimey on Jun 22nd, 2005, 9:37am Iain contact Mike Pollock at OUCH UK, he is one of the trustees and also helps man the helpine and has had the ONSI op himself so he can give you first hand info on it! I'm so sorry you are even contemplating it. I saw a film of it being done this weekend just gone and its no easy decision. Look after yourself and let us know how you are getting on Helen |
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Title: Re: Occipital Nerve Stimulation Transplant Post by Iain Nicol on Jun 22nd, 2005, 10:14am I just put a note on the 'getting to know you' board. read that - there's a hint as to why i am considering it. my clusters are getting longer. I know a percentage of sufferers can move from cluster to chronic. I do not want to be one of them!!!! We'll see. I'm covered privately for this, so i'm going to get as much advice as i can while someone else is paying for it!!!! |
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Title: Re: Occipital Nerve Stimulation Transplant Post by nani on Jun 22nd, 2005, 10:19am IMHO...all the alternatives should be tried before resorting to any kind of brain surgery. |
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Title: Re: Occipital Nerve Stimulation Transplant Post by hdbngr on Jun 24th, 2005, 4:08pm Guys... The occipital implant is not brain surgery. While it is not a minor procedure, it is not really that bad, either. It is a strong consideration for those with chronic pain, and the electrodes and battery are placed under the skin on the chest wall and under the scalp (connected to the nerves), not inside your brain. In addition to Medtronic, a company called ANS (Advanced Neuromodulation Systems) makes them as well. Dr. Ferro in Lansing, Michigan is doing the surgery, too. This is not brain surgery. The brain surgery folks are mentioning is called deep brain stimulation (DBS) and actually involves cutting through the skull and implanting an electrode in the hypothalmus, which is a lot more serious. The ONSI is a valid treatment for clusters. While it doesn't help everyone, they will do a trial implant to make sure it is effective before proceeding. It takes about two weeks to feel better and about six of not lifting anything so that the leads will anchor. By all means, try the least invasive stuff first, but if that doesn't work, ask about the ONSI. It does help. |
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Title: Re: Occipital Nerve Stimulation Transplant Post by Lizzie2 on Jun 24th, 2005, 5:53pm Agreeing wholeheartedly with the above post on the ONSI. It is NOT brain surgery. The biggest risk (and still not a very large risk) is for infection. Most places will do a trial implant (which is more or less external) for about a week. They will do a permanent implant based on the success of the trial. If the trial does not work, they won't do the permanent. <g> (If a doc says they want to put the permanent in when the trial does not work...you may want to get another opinion!) They are doing it at Jefferson...Dr. Ashwini Sharan at Jefferson Hospital for Neuroscience (Philadelphia). I wrote a post on my appointment/consultation with Dr. Sharan, but I don't have enough time to go searching for it at the moment! Ultimately, he didn't feel it would help me because my headaches (and most CH'ers really...) have headaches around the eye and down the face...the affected nerve (occipital) has been proposed not to go *as* far forward to help with people who's headaches are extraodinarily frontal in nature. One way to get a little idea of whether or not the stimulator may work (and far less invasive, expensive, etc) is to have a physician (find out who your insurance will accept - sometimes they will take a neuro/headache specialist, and sometimes it has to be someone certified in pain/anesthesia) do an occipital nerve block. Supposedly the success with the nerve block can provide a little insight into the success of trying the stimulator. Do a lot of research before deciding on any surgery! Sure, it isn't brain surgery, but there's still the risk of anesthesia and infection. I do believe that it is likely to be most successful in people who have a headache type which is triggered by tension in the neck, but that is debatable at times (depending on who you talk to). I would really recommend making sure whatever surgeon you decided to go to had some experience in implanting the medtronic stimulators. Definitely want someone who knows what they are doing! One last thing...the medtronic stimulator is not yet FDA approved for headaches. If you can't get through a study, you probably will have to pay out of pocket, as insurance isn't really covering it yet! Best of luck! Carrie :) |
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Title: Re: Occipital Nerve Stimulation Transplant Post by burnt-toast on Jun 24th, 2005, 10:44pm on 06/21/05 at 13:27:10, burnt-toast wrote:
This information was included in my earlier post in the hopes of avoiding confusion between Brain Implants and Occipatal Nerve Implants. Please note that while researching surgical options for CH - the surgical studies almost always conclude that due to the risks associated with relatively new surgeries they should be only be considered for the serious chronic sufferer. (someone please define a not so serious chronic sufferer for me [smiley=huh.gif]) My data is far from complete but indications are that short-term success rates can range anywhere from 60+% to 80+% (depending on procedure) with long-term success trailing off to the 40% to 50% range - again this depends on the procedure. I have come across trials that claim very high long-term success rates but these do not appear to be the norm and I'll have to obtain more detailed information for these. I have primarily focused on U.S. trials with limited European data but from reading many of the posts here it appears that European use of surgery to threat CH may be much more common. I'll have to expand my search. If anone comes across current surgical trial data feel free to please forward it to me and I will include it with the information I am gathering. Tom |
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Title: Re: Occipital Nerve Stimulation Transplant Post by hdido on Jun 25th, 2005, 7:31am I've had direct contact with the surgeon performing ONSI in the UK. Approxiamately 6 have been done and there has been a fairly consistent problem with the wires either slipping out of place or breaking-one person recently had a third surgery due to this problem. It can take up to 6 months for this procedure to work; there is also a problem with the batteries lasting only one or two years, so more surgery would be needed to replace them. To the best of my knowledge, this procedure has only been partially successful with one patient and in that case the pain moved from the left eye to the right eye after six months; while in this case the pain has been reduced, use of oxygen, Imitrex and other abortives are still necessary. There can also be problems with lateral head movement due to the scar tissue from the operation and when the current is on, vertical movement of the head is very limited (this info from a person who had the procedure) and must be turned off if one is to drive, etc. As of about 3 months ago, data on patients was not being kept on a regular basis. The Deep Brain Stimulation (DBS) operation, done primarily in Milan, Italy, claims an almost 100% success rate in terms of stopping the CH pain completely or almost completely, but how valid this data is is questionable. The overall complication rate for this procedure is between 1% and 3%. The operation is the same as the one used very successfully for Parkinson's disease except that the electrodes are implanted in a different part of the hypothalamic region of the brain. I've posted most of this information before, but it appears that more people are asking about these procedures, so I'm posting it again. There was one death in Liege, Belgium-a female patient who was having the DBS operation done for Parkinson's disease bled to death due to a ruptured blood vessel. The latest information that I have is that the cause of the rupture appears to have been a weakness in the vessel but until that is confirmed, the operations have stopped in Liege. The long term success rate for CH patients is unknown as the operation has been done since 2002, but thus far none of the patients has experienced any physical problems from the operation. Zaira wrote to me that she knows of 8 patients who have had DBS without improvement, but attempts to reach her and get more specifics by me have been unsuccessful ***IF YOU READ THIS, ZAIRA, PLEASE IM ME OR SEND ME AN E-MAIL OR PHONE ME, I'VE SENT YOU THAT INFORMATION*** I will keep you all informed as I get more informtion. I hope that I have been helpful. There is a myth floating around that 10 people had the DBS operation for CH and that it worked for 5 of them and not for the other 5, so those 5 all committed suicide-NOT TRUE! |
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Title: Re: Occipital Nerve Stimulation Transplant Post by AndreaD on Jun 27th, 2005, 10:05am on 06/25/05 at 07:31:34, hdido wrote:
Hi, just wanted to tell you that Zazi can't read your message, she is out of Italy. Good Luck, Andrea |
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Title: Re: Occipital Nerve Stimulation Transplant Post by whitewatertazz on Jun 27th, 2005, 2:14pm :) I just had it done before Memorial Day at NorthWestern Hospital in Chicago by Robert Levy. He does a tremendous amount of Neuro Stimulators surgeries...for all sorts of ailments. The process that I went through was vigorous before I had it installed. One way of determining if it will work is if a Occipital Nerve block would work. They worked for me for 2 - 4 days, based on that...they said I was good for a trial. I had it installed for 2 weeks, but unfortunately the elctrode eroded through the skin. Worked unbelievabley well...and I had my life back. I should have it reinstalled in 2 weeks from now. I am not a typical CH sufferer. I have been Chronic for 2 1/2 years...pretty much 4 attacks per day...up to 8 with very little to none pain free days. Some meds work for short time or did not work at all, kind of left with one decision. Plus I am extremely sensitive to light and sound all the time. I also had a brain tumor removed 2 years ago...they thought was the cause of pain. So I am expert on brain surgery...Had it done...releaved my headaches for 2 months...we thought that was it. No luck... |
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Title: Re: Occipital Nerve Stimulation Transplant Post by unsolved1 on Jun 27th, 2005, 7:53pm on 06/24/05 at 17:53:02, Lizzie2 wrote:
My insurance covered it for cluster headaches ;) Unsolved Edited to add that an Occipital nerve block worked for me the first time only. 17 days PF |
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Title: Re: Occipital Nerve Stimulation Transplant Post by Lizzie2 on Jun 27th, 2005, 7:57pm on 06/27/05 at 19:53:06, unsolved1 wrote:
Oooh what insurance? Let me know before I have to fill out my benefits form in the next week or two...haha J/k...I really only have one choice of insurance co's because I have to take the max offered! Carrie :) |
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Title: Re: Occipital Nerve Stimulation Transplant Post by pubgirl on Jul 1st, 2005, 5:13pm [quote author=hdido link=board=chspecific;num=1119354618;start=0#14 date=06/25/05 at 07:31:34]I've had direct contact with the surgeon performing ONSI in the UK. Approxiamately 6 have been done and there has been a fairly consistent problem with the wires either slipping out of place or breaking-one person recently had a third surgery due to this problem. It can take up to 6 months for this procedure to work; there is also a problem with the batteries lasting only one or two years, so more surgery would be needed to replace them. To the best of my knowledge, this procedure has only been partially successful with one patient and in that case the pain moved from the left eye to the right eye after six months; while in this case the pain has been reduced, use of oxygen, Imitrex and other abortives are still necessary. There can also be problems with lateral head movement due to the scar tissue from the operation and when the current is on, vertical movement of the head is very limited (this info from a person who had the procedure) and must be turned off if one is to drive, etc. As of about 3 months ago, data on patients was not being kept on a regular basis." This information is very misleading about the ONSI's in the Uk for Ch sufferers , I know who you are hdido so please get your facts right. You do not know the full circumstances with the individuals involved and it isn't a good idea to suggest that you do. If someone would like to know about the ONSI in the UK (which is more hopeful than this post suggests) I would do what Helen suggests and talk to OUCH UK and the several people who have had it done. Wendy |
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Title: Re: Occipital Nerve Stimulation Transplant Post by SteCo on Jul 1st, 2005, 6:22pm Quote:
Hi Iain, Welcome to the site. In regard to the above quote check this site out. www.clusterbusters.com As others have suggested, I would exhaust all other avenues (including alt. therapies) before trying surgery. The surgery option will always be there if other things do not work. I have went the clusterbuster route and have gotten some great relief. Many others have experienced the same. Good luck with whatever you may try! SteCo |
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Title: Re: Occipital Nerve Stimulation Transplant Post by Mike_P on Jul 3rd, 2005, 7:16am John (Hdido), nice to see you posting over here, at least it means you’re not posting your negative, inaccurate statements on The UK site. Wendy has said your post is misleading, I would say it was downright wrong. There have been five ONSI operations in the U.K. Mine, (the first in The UK) done in July 2003 has been of massive benefit, I am no longer on Verapamil, despite your suggestion that I was, I have maybe, at worst, two attacks a day, down from the multiple daily attacks I had pre ONSI, for which I very rarely take medication because they are never, ever worse than a Kip 4/5 and my neck movement is completely unimpaired. Driving is fine for me and indeed for the others who have had it as far as I know. I knew this was not a quick fix but my attacks have improved by some 70% and I think it will go higher. I know three other sufferers who have had the operation and although one of them has indeed had migration problems with her wires, this is a mechanical problem and hopefully in the past. Of the other two sufferers one has 2 or 3 attacks a week, some improvement eh? The other reckons she has had in excess of a 50% improvement, I must point that there was an 8 month gap between my operation and the second one in the UK and I feel that the other four recipients of ONSI will make further improvement. Whilst with this damn illness we all respond differently ONSI has been successful in the UK and I don’t feel it is helpful to suggest otherwise. Finally, data is being kept on a regular basis now, it’s just that it hasn’t and isn’t being published yet. |
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Title: Re: Occipital Nerve Stimulation Transplant Post by pubgirl on Jul 5th, 2005, 8:51am No answer then hdido or John or whatever your name is this week? PCMCCK (from Mia's "no longer chronic " thread or John or ref below: Re: no longer chronic « Reply #325 on: Apr 6th, 2005, 8:37am » Quote Modify -------------------------------------------------------------------------------- O U R * N A M E S * A R E * L E G I O N * !!! John Truth is,we forgive almost everything, but (sound like Jonny here God forbid) attempts to attacks or denigrate ch.com or OUCH (UK) get forgiven only a few times. Your repeated unpleasantness on both only serves to show your illness. Post with useful suggestions for improvement, not attempts to damage and people might listen. Also suggest you leave your evident paranoia at the counsellors door before you post too. I mean you no harm, but your actions are troll-like and if they continue, you will be treated like a troll. Wendy |
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