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Title: Occipital nerve stimulation? Post by Globi77411 on Jan 20th, 2004, 7:25am I would like to know if there are any people here who had the occipital nerve stimulation operation (Dr. Dodick, Mayo clinics). It was a topic before but it seems impossible to find that discussion again. According to my info there should be at least 20 + clusterheads in the US who had this treatment done. Hopefully soon I will have this treatment done by dr. Goadsby in London and I am curious what to expect. How many days do you have to be hospitalised? Is the healing quickly? How many times did/do you have to go back for fine tuning the ‘pace maker’? Do you have the batteries built in or did they go for the outside battery option? All info would be highly appreciated. Kind regards, Dirk |
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Title: Re: Occipital nerve stimulation? Post by pubgirl on Jan 20th, 2004, 9:24am Dirk I suggest you also talk to the guy who has had it done at Queen's Square (Goadsby doesn't actually do the op btw, it is a surgeon who does it) You can find him and his report about the progress at www.clusterheadaches.org.uk I am sure he will be happy to talk to you Wendy |
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Title: Re: Occipital nerve stimulation? Post by UN_SOLVED on Jan 20th, 2004, 10:47am Dirk, I'm having a neuro - electrical stimulator put in within the next 2 weeks at MHNI (http://www.mhnic.om). They told me I would have a 'trial' version first (where the wires and battery pack is NOT actually implanted) for 5 days. They want me to have a headache to see if it'll work. If it does, I'll have it implanted. The stimulator that I saw (from medtronics) was smaller than I expected. If you (and the docs) believe that you'll be needed the stimulator on for long periods of time, they might opt to give you the external battery (9 volt rechargeable). I have frequent headaches on either side so I think I'm getting the external battery pack. (I don't think you'll get both). I was told to expect some soreness. More if the stimulator is actually implanted. The implanted wires under the skin causes the most pain they say, but it still can't be worse than a cluster. They said I would need to wear a 'soft collar' for up to 8 weeks...not because of soreness / stiffness , but so the wires won't break. The stimulator will work better when scar tissue forms over the leads giving them a better grasp on the nerves. I'll be posting my experences / results with it soon Good luck UNSOLVED (http://cluster.home.insightbb.com) |
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Title: Re: Occipital nerve stimulation? Post by pubgirl on Jan 20th, 2004, 11:05am Hello Dirk Hello Unsolved I have asked him and Mike, the guy in the UK is very happy to talk to you about his experience (he had one side done a few years ago and awaits the other side) Good luck Unsolved (who is I think having both sides done at once?) Wendy |
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Title: Re: Occipital nerve stimulation? Post by lapowers on Jan 20th, 2004, 11:49am My husband Terry had it placed 6yrs ago in Munich Germany. He was hospitilized for two weeks during the trial period. He had very little discomfort from it. It took a few attempts to get the stimulation to the right area. Then he was in again for about a week for the final implantation. We were in Germany 6wks. From the first day he saw relief, each day was better. By the time we left for home to the U.S. he was 100% PF. He had to return once to Germany to have the electrode moved(due to scar tissue) they also implanted a second electrode at that time. He is presently on the waiting list for the doc's at Mayo Clinic in Arizona to have it looked at. Thanks to this website we were able to get info and find a doc in the US finally doing these so that we don't have to travel so far when there is a problem. I hope that both you and Unsolved have great results. My husband finally got his life back after many long hard years of suffering. He can't wait to go to Mayo to have it adjusted so that he is PF again. When my husband had it done there was no one in the U.S. doing it and his doctors sent him because there was nothing left to help him here. It was a scary step to take but the results were well worth it. When he returned and saw his doctors the couldn't believe how well he was doing. He looked like a new person. That constant look of pain was gone from his face!!! Any info or help we can give with our experience with the stimulator please let us know. I look forward to hearing your results. Laurie |
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Title: Re: Occipital nerve stimulation? Post by Prense on Jan 20th, 2004, 12:05pm on 01/20/04 at 10:47:39, UN_SOLVED wrote:
LOL, how many profiles do you have?? Kickass web site BTW!! Chris |
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Title: Re: Occipital nerve stimulation? Post by Tiannia on Jan 20th, 2004, 5:18pm My doc wants to strip this nerve. Take the outer layer off of it. Thinks that it will reduce the pain resepection if they do this. Have you heard of this? Tiannia |
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Title: Re: Occipital nerve stimulation? Post by UN_SOLVED on Jan 20th, 2004, 7:34pm Hey Pubgirl ... Prense [smiley=hiya.gif] Never heard of stripping a nerve. [smiley=huh.gif] So, Laurie ... how often does the stimulator need to be 're-adjusted' ? It sounds like it worked out good for Terry. Congrats! MHNI said I wouldn't be hospitalized at all. It will be done on an outpatient basis. I will have both sides done at the same time. (Before the end of this month). They do want me to stay in town for a few days after. UN_SOLVED (http://cluster.home.insightbb.com) |
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Title: Re: Occipital nerve stimulation? Post by lapowers on Jan 21st, 2004, 1:12am Unsolved Terry had great PF results for a year and half after it was placed. Then he was unable to get the stimulation to the right area for pain relief. The surgeon (Dr. Stuede in Germany) said to have the medtronic's rep here try to recalibrate it on the computer to see if they could increase the range of stimulation. They were unable to so he had to return and have them look at it. He formed alot of scar tissue around it so they were unable to move it. They placed a second elcetrode. Being that he had it done in Europe they tend to keep you in the hospital longer. That was the joke when we were there, the docs said the US doc's preform brain surgery on you and let you out that afternoon!! He need it to be checked again and that is why he is going to the Mayo clinic in Arizona. It will be a relief to have someone a bit closer to monitor it. We look forward to hearing how it all goes for you. As I said before my husband was a new guy after. He wasn't able to work, eat or just enjoy life before we went. I apologize for being long winded but I am so happy to hear of someone else finally having the opportunity at getting pain relief without all the awful side affects of the drugs. The first place my husband visited after he came back was the emergency room to let all the doctors and nurses who accused him of being nothing more than a drug addict for years that his pain was real. He got a few apologizes. It just goes to show that sometimes the average guy with the chronic illness knows a bit more than the guy who studied the medical books and sees you in the ER and lumps everybody with headaches as just drug seekers. Wishing you all the best and please let me know how it goes. If there is any other info we can help with just let us know. At the time we went we know no one else that had CH let alone anyone who was having this done. Laurie |
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Title: Re: Occipital nerve stimulation? Post by lapowers on Jan 21st, 2004, 1:24am Tiannia My husband had two nerve decompression surgeries done. They basically took any pressure that was on the nerve off of it.He had very little relief from it. Thank God he never had the nerve cut like one doctor suggested!! The pain specialist he saw for the next 6 yrs after said it isn't wise to touch nerves because the results can be worse than the pain you already have. Once nerves are manipulated they are never the same.Seeing what my husband has gone thru I wouldn't do it. laurie Laurie |
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Title: Re: Occipital nerve stimulation? Post by Globi77411 on Jan 21st, 2004, 5:10am Hi all, Thanks for all the info. Pubgirl: Thanks for the tip about the guy (Mike) on OUCH UK. Good to read some more about this treatment. I will contact him through OUCH if possible. I will have both sides done at one time as well. Awaiting surgery schedule from Queen's Square at this moment. Un-solved: the external battery pack will probably suit me best as well because I am a chronic with pain on both sides (mostly left). Hope to hear good news and results from you in near future! Lapowers: 6 years ago in Germany? I don’t understand why it takes insurances companies this long to have this treatment covered. Great that your husband is doing so well! Maybe the smaller (more sophisticated) stimulator form Medtronics is an option for him now. Are US insurance companies now covering this operation and follow ups? Although I probably cost my insurance company (in Holland) around USD 8.000,- a month for medicine at this moment it refuses to pay ANY cost concerning this operation…..not even the bed in hospital…..because it’s experimental. I can’t even begin to imagine how my life will look like after a successful operation. I am also tired of explaining to people what I have and why it’s impossible at this moment to work. My focus span and memory are very bad at this moment, hope that will change as well. Thank you all again. I will keep you informed. |
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Title: Re: Occipital nerve stimulation? Post by lapowers on Jan 21st, 2004, 10:13pm globi77411 6yrs ago it was not being done at all here. I believe presently it is still not FDA approved and being done on trial basis. Before we went to Germany my husband had 1 million dollars of medical treatment. You would think that when we went to Germany to have something done that would no longer cost them tons of $$$ they would cover some of it. If it is not FDA approved here it is not covered and considered experimental. My husband does have the smaller stimulator from Medtronics and his battery is internal. They said the battery has about a 6-10 yr life with daily use. The hospital he had it done at was a teaching hospital and when the doctors and med students would do rounds they all couldn't believe that we lived in California and had to travel to Europe to have it done. The surgeon explained that in the US people sue more often than there so the FDA approval takes a very long time!!! It cost 1/3 in Europe what it would to be done here. At the time it was $200 aday in the hospital and here in Calif it was about $2000 a day. Look forward to hearing how you do. Laurie |
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Title: Re: Occipital nerve stimulation? Post by Prense on Jan 21st, 2004, 11:19pm Experimental procedures...doesn't research funding, grants, etc. cover things like that? Assuming they still needed data for approval, it seems to me that they would jump at the opportunity to slice open a volunteer... ;;D Just a question... Chris |
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Title: Re: Occipital nerve stimulation? Post by lapowers on Jan 22nd, 2004, 11:10am Chris I believe you are right. In my husbands case it wasn't being tested yet here. It was not considered experimental in Germany because the doctor there had been placing them for about 5yrs. We were unable to recive any help from our insurance because it was not FDA approved here in the US. Laurie |
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Title: Re: Occipital nerve stimulation? Post by Tiannia on Jan 22nd, 2004, 1:38pm on 01/20/04 at 17:18:54, Tiannia wrote:
reception ok I don't know how to spell. What I had done was they did three shots into the nerve and "froze the nerve" and I got about 3 days relief. I just got pressure but no pain like a full blown ch. How they described it was that they go in and they take a "hot" needle and the burn the outer layer of the nerve when the majority of the pain receptors are and that there is a 50/50 chance of it helping. That because I had a marked improvement from the shots that there is a good chance that this will help. That the people who have only a nominal improvement from the shots usually do not get much help from the burning. Granted there is a chance that it will make it worse as well. But I at this point I am going to take that chance. I have to wait and see if the insurance will approve the procedure. And then they have to schedule it. I will let you know if it helps at all. |
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Title: Re: Occipital nerve stimulation? Post by Zonie on Jan 31st, 2004, 11:47pm This is somewhat off base when pertaining to occipital stimulation, but this seems to be a real concentration of learned people concerning occipital nerves. My neurologist has recently done 2 occipital nerve blocks on me in an attempt to break my "cycle" (which has lasted almost 8 years now). Neither block did any good at all, but after reading about the stimulation, I just wondered if anyone had ever experienced any success from a block. |
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Title: Re: Occipital nerve stimulation? Post by UN_SOLVED on Feb 2nd, 2004, 4:36am I've had 5 bi-lateral Occipital nerve blocks. The very first one provided 17 days of pain free time. Can't say much for the other 4 times. UN_SOLVED |
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