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Title: occipital nerve stimulator - help please Post by M8895 on Apr 7th, 2004, 9:28pm can anyone provide info on this procedure and or results? my neuro just suggested the procedure to me and i'm considering it. any and all info would be of great help. thanks, connie |
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Title: Re: occipital nerve simulator - help please Post by Lizzie2 on Apr 7th, 2004, 9:42pm Connie, I personally don't know anything about it, but I've heard Dr. Young say it has helped somebody before. I don't know what kind of headaches she had, though. Hopefully someone else can be more helpful! Lizzie :) |
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Title: Re: occipital nerve simulator - help please Post by M8895 on Apr 7th, 2004, 9:50pm Thank you Lizzie, It's nice to hear from you. I'm really getting hit bad. how are you doing? |
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Title: Re: occipital nerve simulator - help please Post by Lizzie2 on Apr 7th, 2004, 9:58pm Also having a really rough time lately!! I did have a good neuro appt today though over in NJ. I'm going to start a prednisone taper tomorrow or the next day hopefully. I think we'll just keep trying things and see how it goes!! I might switch back to Jefferson Headache Center when I'm a student at Jefferson. I don't know yet... Hugz, Lizzie :) |
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Title: Re: occipital nerve stimulator - help please Post by M8895 on Apr 7th, 2004, 10:02pm I hope that your prend taper goes well and that you have pf time and rem time. Get your behind back to Jefferson girl. It really is a good place. Have you met Dr. Joshua Khoury? |
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Title: Re: occipital nerve stimulator - help please Post by pubgirl on Apr 7th, 2004, 10:06pm Connie Go to the OUCH UK message board (www.clusterheadaches.org.uk) and you will find a long thread there about the guy in the UK who has had the procedure at the London Institute of Neurology supervised by Prof Goadsby. He is usually very happy to talk privately to anyone who is considering having it done. He was the first in the UK to have one side done, and has just had the other side done with so far (touch loads of wood for him and hoping not to tempt fate as he has suffered so very badly for so many years) very promising results (early days yet though) Wendy |
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Title: Re: occipital nerve stimulator - help please Post by M8895 on Apr 7th, 2004, 10:10pm Thank you Wendy. Will do! I appreaciate your response very much. I'm a bit apprehensive.... Thanks again. Connie |
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Title: Re: occipital nerve stimulator - help please Post by Lizzie2 on Apr 7th, 2004, 10:12pm Connie, I never met him but someone on another headache site was talking about how great he was with their spinal tap! So far, things are going pretty well over in NJ, but there are some things I miss about Jefferson...and some things I don't!! LOL Lizzie :) |
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Title: Re: occipital nerve stimulator - help please Post by M8895 on Apr 7th, 2004, 10:25pm yes, he is a great doctor. he will bend over backwards for you and he also did my spinal tap and was very gentile. he did my botox and was patient and gentile with that too. 20 inj to the head isn't fun. he's pretty darn cute too. the botox didn't work. they are increasing my topomax to 800 mg a day. i'm going to be pretty stupid! |
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Title: Re: occipital nerve stimulator - help please Post by Lizzie2 on Apr 7th, 2004, 11:09pm Wow 800 mgs?? Nuts! Actually that is one of the reasons I left there. They never changed my meds...just kept on increasing them. They stopped trying new things after awhile... Really bugged me! At UMDNJ, they try something new almost every month if the other things aren't working. Very helpful! I think that doctor must have started there after I left at the end of the summer. Dr. Silberstein did my botox the first time....it was actually more funny than anything! hehe Take care, Lizzie :) |
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Title: Re: occipital nerve stimulator - help please Post by Eeyore on Apr 8th, 2004, 2:46am Unfortunately, as I read in another post, it might be impossible to view the OUCH UK message board unless you pay a fee. They might not have put it in effect yet, but if that is the case, I pulled this link for you from the OUCH US site... Occipital nerve stimulator... http://www.clusterheadaches.org/library/surgery/occipital_stim.htm I also pulled these as well, cause if you gonna look at that you might as look at these too. They are pretty interesting... Some things I must truly consider if the Clusterbusters treatment does not work for me... Occipital Nerve Block... http://www.clusterheadaches.org/library/surgery/occipital_block.htm Stereotactic Stimulation... http://www.clusterheadaches.org/library/hypothalamus/wire_in_brain.htm Hope this helps a little... - Eeyore - |
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Title: Re: occipital nerve stimulator - help please Post by pubgirl on Apr 8th, 2004, 3:49am Connie can go and see it right now if she wants, without being a member. It is the first string on the meds board (sorry Connie, I'm crap at links) The value of the UK man's information is that he is telling it as it happens. And Connie, if it helps he describes how it was done and how little it hurt! If, please God, his current state of health continues, this is an enormously exciting development for chronics. We owe this guy and the team at Queen's Square an huge debt of gratitude if that is the situation. There are now other chronic patients lined up for the procedure as well. Praying here Wendy |
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Title: Re: occipital nerve stimulator - help please Post by Eeyore on Apr 8th, 2004, 4:26am on 04/08/04 at 03:49:07, pubgirl wrote:
That's weird, When I go to the OUCH UK message board... (Link provided here...http://www.ouchuk.org/cgi-bin/yabb/YaBB.cgi?added=04/01/04) It says... Quote:
Can one still register as a member and view the forum without creating an account and paying? I only assume that by saying that one needs to create an "account," it means to pay, correct? I would think if it you didn't have to pay it say something like, "profile." I don't know, I'm asking. Ya'll just might say it in a different way over there in the UK. Thanks - Eeyore - |
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Title: Re: occipital nerve stimulator - help please Post by Eeyore on Apr 8th, 2004, 4:58am Looks like I answered my own question. I went ahead and filled out the registration form for the board and the issue of money never came up, except for the question about donations and if I was a paying member already. I got my username and temporary password in my e-mail, but unfortunately, the administrator has to approve all of it before I can view anything. Bummer. I'll hopefully be able to look at it tomorrow. - Eeyore - Update: Oh, Oh, Oh... wait a minute, I just got approved 7 minutes later in the e-mail, well that was much faster than I imagined. Good deal, a whole new board of info at my disposal. And yes I promise, no shroom talk. Hell, I probably won't even post. Talk to ya'll later. - Eeyore - |
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Title: Re: occipital nerve stimulator - help please Post by Eeyore on Apr 8th, 2004, 5:16am Pubgirl is right. That thread is very interesting over there on the OUCH UK message board, and I've only read the first page. If any of you out there are interested in occipital nerve stimulators, and you have not checked out the thread at the OUCH UK message board, you have to go register and check it out. Thanks Pubgirl! - Eeyore - |
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Title: Re: occipital nerve stimulator - help please Post by M8895 on Apr 8th, 2004, 5:33am I registered but the admin hasn't allowed me in yet but I can't wait to read about it. I pulled some info about it off of the web so far. Your support is wonderful guy's. Thanks bunches. Con |
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Title: Re: occipital nerve stimulator - help please Post by pubgirl on Apr 8th, 2004, 6:00am Let me know what you registered as and I will try and speed it up W |
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Title: Re: occipital nerve stimulator - help please Post by M8895 on Apr 8th, 2004, 6:24am Wendy, I was just there and read everything. It sounds like a pretty good deal. Thank you very much for guiding me towards that site. No more liver killing drugs! I would want it installed on both sides right away and the only thing that frightened me is this bit... The implants aren't without risk, the FDA warned. About 7.5 percent of study participants experienced bleeding in the brain, 11 percent had an infection related to the device and 10 percent experienced some paralysis however 7.5 is a low percentage. These things are killing me now. Wendy I'm going to have it done. Thank you for your help and I'll keep posting on my progress. Connie |
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Title: Re: occipital nerve stimulator - help please Post by pubgirl on Apr 8th, 2004, 6:38am I am stunned by what you have posted about the risks. It doesn't actually get implanted in the brain, so I can't understand these stats. Are you sure they are for the ONSI procedure and not for a deep brain implant of some kind? Wendy P.S. If you private message me your email address I will ask the guy in the UK if he will talk to you before you have the procedure done. |
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Title: Re: occipital nerve stimulator - help please Post by M8895 on Apr 8th, 2004, 9:49am Yes Wendy, I read it on his thread. It's 14 pages long. They install the battery pace maker type thing behind your collar bone and then the wires in your neck at the base of your brain. If the stimulator is only installed on your CH side then your CH moves to the other side of your head with a vengence which is why I want it installed on both sides right away. Then you go through a period of pretty bad attacks for about 3 or 4 months until the tissue hardens around the wires to keep the wires from moving around and then you start seeing signs of relief. Connie |
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Title: Re: occipital nerve stimulator - help please Post by pubgirl on Apr 8th, 2004, 10:20am Connie I'm aware of all that, I know him, have even felt his powerpack if you get my drift ;;D I meant the stats you got from the FDA about the risks. They seem very odd to me as risks associated with the ONSI. Did you read that on the UK thread, if so , I have missed it. I have certainly never heard of anything as serious as they are suggesting, and very, very few ONSI's have been done so I wonder where they got their information from. The nerve stimulator is subcutaneous, not in your brain itself at all, it is all done under local anaesthetic so it is not invasive at all so brain bleeding and paralysis would seem really unlikely. I was just checking that that 7.5 % you quote refers to ONSI's Wendy P.S. I think all ONSI's might be done now on both sides, the one-sided ones were a few years ago. Wendy |
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Title: Re: occipital nerve stimulator - help please Post by M8895 on Apr 8th, 2004, 11:01am Wendy, Thank you for putting my mind at ease. I'll go back and review. At Jefferson in Phili I was told that there were very few risks involved. I'm hopeful and grateful for this suggestion and possibility. Are you Chronic? Have you looked into this option? (if you don't mind me asking) and yes, if you have developed a repor with him I would be grateful if you would ask him about the risks involved with the procedure. It's all a little frightning when your are talking about going under the knife in that area. Many Many Many. Did I say Many? Thanks Lots of hugs to you! Connie |
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Title: Re: occipital nerve stimulator - help please Post by Tiannia on Apr 8th, 2004, 1:21pm As I said on the other thread, please talk to Unsolved. He had a temp on e installed. This was a test to see if it would help him and make sure that it iwas safe. He is very helpful about hte procedure and how it assisted with his chronic CH -Tia |
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Title: Re: occipital nerve stimulator - help please Post by pubgirl on Apr 8th, 2004, 1:25pm Tia Unsolved's wasn't successful I thought according to him. They must do it differently over there though because there's no such thing as a temporary one here, as it takes a while for the wires to "bed down" as it were and to get all the settings right. Connie If you message me wih your email address (I will keep it private) I will pass it on to him and he will contact you. I am going away tonight though so it will need to be soon. Alternatively just contact him direct via the IM system on OUCH UK, I'm sure he won't mind a bit as he is always happy to help people. |
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Title: Re: occipital nerve stimulator - help please Post by M8895 on Apr 8th, 2004, 5:04pm Tia, Thanks, Connie |
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Title: Re: occipital nerve stimulator - help please Post by pubgirl on Apr 8th, 2004, 5:10pm Got it Connie, message has gone to him already, now delete your message and email address quick before you get spammed to death! Next time, safer to message email addresses via the Internal message system, not post it here. Wendy |
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Title: Re: occipital nerve stimulator - help please Post by UN_SOLVED on Apr 8th, 2004, 6:47pm I was the first one to have a 'Bi-lateral Occipital Nerve Stimulator (trial) implant. I had it done on March 9th at MHNI. Sorry, didn't work for me. I don't believe that stuff about being dangerous and the 'brain bleed' bit. It is minimally invasive. They don't go into your brain ... just near the nerves on the back of your head. Have any specific questions about this procedure ... plz ask. Unsolved |
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Title: Re: occipital nerve stimulator - help please Post by Tom on Apr 8th, 2004, 8:01pm Well, i'll communicate you the risks of the a.m. procedure, being a surgeon and PCHead myself: - it's a safe subcutaneous procedure outside the skull - thus: this procedure doesn't touch the brain, never ever! - the maximally imaginable = worst side effect of the procedure concerning the occipital nerves are permanent damages of the sensitive nerves in the occipital area with a loss of nervous sensation there - this complication is imaginable, but not recorded/observed, as far as I know. - the implanting of the cables under the occipital skin and that of the electrical stimulator under the collar bone may cause a subcutaneous bleeding - a minor surgical problem. - all procedures may cause a subcutaneous infection - generally a minor surgical problem. Thomas |
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Title: Re: occipital nerve stimulator - help please Post by M8895 on Apr 9th, 2004, 5:41am To both Thomas and Unsolved, would you please talk about the surgury from begining to end? The details and your experience with the CH. Possible switching from side to side. CH coming back with a vengence after having the stimulator put in. I would be grateful for anything and everything that you are willing to share. Thank you for comforting me about the possibility of something going wrong during surgury. Many thanks, Connie |
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Title: Re: occipital nerve stimulator - help please Post by M8895 on Apr 9th, 2004, 5:50am Wendy, Your friend from the UK emailed me. Thank you so much. He is being very informative and helpful. You folks are really giving me the information that I need and putting my mind at ease. I can't thank you enough. Connie |
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Title: Re: occipital nerve stimulator - help please Post by Tiannia on Apr 9th, 2004, 11:29am Wendy & Connie - I wasn't trying to say that it worked for Unsolves, I just wanted to let her know that he is one of the best peopl eon the US side of the board that can discuss it. What worked what did not work and everything else. -Tia |
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Title: Re: occipital nerve stimulator - help please Post by M8895 on Apr 9th, 2004, 12:01pm Tia I understand what you were doing and I appreciate it very much. Thank you, Connie |
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Title: Re: occipital nerve stimulator - help please Post by UN_SOLVED on Apr 10th, 2004, 12:08am One of the first things that MHNI tried on me was an Occipital nerve block. The first one was a 17 day PF success. I had it done 4 times after with not much luck. We tried still other drugs and then the RF procedure which did nothing. I was then told that the next step was the Occipital nerve stimulator implant, on a trial basis. If it worked, we would do the full implant 3 weeks later. I was told that those who responded well to an OC block has a decent chance at success with a stimulator. First thing we did was talk about the device itself and possible side effects to the procedure which didn't include much except for the possibility of infection. I was told it was very safe and had been done for quite some time. We scheduled the procedure at Chelsea Hospital in Michigan to be done by Dr. Rogers of MHNI on an outpatient basis. I would have the trial for a week then have it removed and discuss the results afterwards to see if I would want the full implant. On March 9th, 2004 I had the procedure. I woke up in the recovery room still very groggy and in little pain. The lower part of the back of my head was shaved and the (2) wires were coming out and taped to the back of my neck and my back. The wires came down to my side and into a little computer box (a bit bigger than a pager)which controlled the intensity of the electricity. (It was powered by 2 - 9 volt batteries). The first day I was still so groogy I just slept most of the day. I woke the second day and had to report to MHNI for 'adjustments' to the electrical parameters. The left side lead was not working at all. It just needed to be cleaned. Aparently a small amount of blood got on the lead and shorted it out. After adjustments I could feel the electric shooting all the way from the lower, back part of my head all the way over my ears and almost to the front (but not all the way and not into my eyes or face). I returned home and was quite uncomfortable for the first few days. Unable to sleep on my back and wearing a 'soft collar' was a bit unusual. I was told to keep the electricity flowing 24/7 for 5 days to see if it would prevent any headaches. The 6th day use PRN and crank it up to see if it would abort a headache. Return on the 7th for removal in the doctors office. (Removal took only minutes and was painless with no medications) The headaches continued throughout the week. The electricity felt like a skull massage with no effect on my headaches. We were all hoping for success but it just didn't happen for me. It was worth the try. I would recommend that if you are considering trying a stimulator, see if you can do a trial like I did without doing a full implant. I would hate to see anyone have a full implant if it's not going to work. If it does work, it would be well worth it. Goodluck Unsolved |
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Title: Re: occipital nerve stimulator - help please Post by M8895 on Apr 10th, 2004, 6:06am Dear Unsolved, Thank you for going into such great detail. That is exactly what I was looking for and needed. In the UK they do this in one step and here it is done in two steps and I think that it has a lot to do with the adjustment that you speak of. between you, Wendy and her friend from London have explained the procedure and the outcome both successful and unsuccessful to me. In his case successful is that he still gets CH however they stay at a KIP 5 or below which sure beats the consistent KIP 10’s that I’ve been getting slammed with. I think that that in itself would be considered a success if it works. I can’t thank you enough for your willingness to be open and the time that you took to go into such great detail for me to explain the procedure and your experience. Thank you Unsolved. I sure hope that there is something out there for you and pray with all of me that this works. The gentleman from London told me that it took trial and adjustment and time about 6 months before he started feeling relief. I’ve read that when they install the stimulator on the CH side the CH switch sides with a vengeance and you have to have the Stimulator installed on the other side as well. I think in America they install on both sides right away. I’m still unsure of that but will find out at my consultation. I’m still in the going through the referral red tape and getting the appointment date set stage. Again, thank you for sharing your personal experience with me and if you would like, I will share mine with you Unsolved. Lots of hugs to you, Connie |
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Title: Re: occipital nerve stimulator - help please Post by UN_SOLVED on Apr 10th, 2004, 11:59am on 04/10/04 at 06:06:40, M8895 wrote:
I was the first to have the bi-lateral procedure. If you experience HA's on just one side, you might have to do some pressing to get it done on both sides. My headaches used to be on the right side only (for 12 years), then when I became chronic in 2000, the headaches started happening on both sides. That is why we did the procedure bi-laterally. Goodluck and let us know how things work out for you. Unsolved |
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Title: Re: occipital nerve stimulator - help please Post by M8895 on Apr 10th, 2004, 12:37pm I will let you know all about it in hopes that it will help others learn too. Thank you so very much again, Connie |
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