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lapowers
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Neurostimulator implants
« on: Oct 28th, 2003, 1:18pm » |
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Hi, I am new to this website and can't believe I hadn't found it before now. My husband has suffered from chronic intractable clusters for the past 13 years. He just woke up with it one day. Over the past 13 yrs he has had fortunately and unfortunately the best medical care there was available in the US. In the first seven years his neurologist and pain specialist tried everything available and then some. We traveled to Canada for Imitrex before it was FDA approved, they implanted a stimulator (the type used for back and neck pain) to see if he could get relief. He had 6 mo of pain free success!! The felt it was worth him going to Munich Germany to have one implanted in his head. Of course again not FDA approved. Five yrs ago, after many months of locating the doctor and getting the appts. set up we made the trip. We were there for 5 weeks. By the time we returned home he was completely pain free and looked like a new person. Before we left for Germany he was on every type of drug imaginable and a morphin pump in his chest to just make each day tolerable. He proved that, headache suffers were not just "drup addicts". He basically threw away all his meds and never went through a day of withdrawal. What a great feeling that was to be able to stop by the local emergency room and tell them all see he isn't a drug addict afterall, but person who has been suffering with pain so real and so terrible that no one deserves to have for one day let alone for years on end. He had a few doctors apologize for the rudeness and unnecassary torture they put him through.
My husband has had great relief from his stimulator when it is working properly. He has had to return to Germany once to have the electrode repositioned and at that time they placed another to help with the pain he was feeling in another area. He again had about 1yr of pain relief. He has been in a cycle for the past few months without relief from anything. His doctors are tryin all different combo's of meds.
I am hoping someone out there may know of any doctors here in the US working with these implants. We need to find someone here, it is draining us in every way and it is impossible to keep going to Germany.
I noticed someone saying something about a doc at the Mayo Clinic in Arizona???
My husband is an incredibly strong and brave person but it worries me to see him sliding back downhill.
If any one can help we would apreciate it. We also can share our years of experience. He has been lucky to have the finest doctors who wouldn't give up and wouldn't allow him to either.
I look forward to maybe helping someone who hasn't been down the very long road we have. Laurie
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Re: Neurostimulator implants
« Reply #1 on: Oct 28th, 2003, 6:15pm » |
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Docs at MHNI are doing electrical stimulator implants. They are about to test a new one from Advanced Bionics and are hand picking five candidates. The only way to be considered is by meeting with Dr. Saper or Dr. Rozen.
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Bob P
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Re: Neurostimulator implants
« Reply #2 on: Oct 28th, 2003, 7:15pm » |
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Dr. David Dodick at the mayo Clinic in Scottsdale, Arizona is working with occipital nerve stimulator implants.
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lapowers
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Re: Neurostimulator implants
« Reply #3 on: Oct 28th, 2003, 7:29pm » |
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Thanks for the great tips. We will check these out. Hopefully they will be willing to look at someone who already has the stimulator implanted. Our problem is that the electrodes being placed for head pain aren't FDA approved yet. Hopefully that will change soon considering my husband had his placed in Europe in 97. We know first hand the great results and how helpful it could be to CH suffers! Thanks again Laurie
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Prense
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Re: Neurostimulator implants
« Reply #4 on: Oct 28th, 2003, 7:38pm » |
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You make it sound as if this procedure needs to be reaccomplished every so often... I am sure I am missing something. I am quite ignorant on the implants though.
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lapowers
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Re: Neurostimulator implants
« Reply #5 on: Oct 28th, 2003, 7:49pm » |
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In my husbands case the electrode position moved and scar tissue formed. The stimulation was unable to reach the area of pain. I can tell you this that when it was working and they had it programmed to reach the area his pain was gone completely.
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Prense
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Re: Neurostimulator implants
« Reply #6 on: Oct 28th, 2003, 7:53pm » |
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OK, thanks for clarifying Laurie.
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Re: Neurostimulator implants
« Reply #7 on: Oct 29th, 2003, 2:52am » |
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I was also told of the 'repositioning', 'reprogramming', and 'fine tuning' ... ??? The one MHNI is going to do with the device from Advanced Bionics is supposed to be quite smaller, easily fine tuned, and perhaps last longer.
PS...I said they were handpicking five.....make that four....i've been picked. Still have to try the Clomid for at least 2 weeks (as long as I don't get worse) and go through with the RF Occipital procedure first then wait two weeks. If this fails...then I do the implant. (BTW...they're paying for everything with the implant)
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hdbngr
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Re: Neurostimulator implants
« Reply #9 on: Oct 30th, 2003, 12:28pm » |
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Dr. Richard Ferro in Lansing, Michigan, is performing spinal and occipital implants for treatment of head and neck pain.
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