Neurostimulation System ????????????
AnonymousDecember 12, 2007 at 1:51 am
I did a search on all the forums here and could not find where anything like this has been mentioned and it came back negative. I always like to do the search before I post. I know there may be all the information I need already posted.
The question…Has anyone here had a neurostimulation system surgically implanted to control pain ? Drs. are saying people with GBS are having this done, but I never heard of it before. I don’t think I will have the surgery to get it done; nless it is the very LAST resort. Thanks, in advance, for all the help you can give. I will go over to the CIDP forum and post there to see if anyone there has heard of it.
God bless all my good friends here, and prayers for all.
AnonymousDecember 12, 2007 at 3:29 pm
Gene, to the best of my understanding after reading the book it is about the same . The devise is often placed under the skin in your abdoman. The two wire leads are placed directly on the spinal cord and the electrical impulses are sent directly to control pain. The name of the pamphlet name is Medtronic Pain Therapies. As I said earlier, this system will be a LAST resort for me.
AnonymousDecember 25, 2007 at 4:37 pm
I have used (and have one) a system called a “ReBuilder”
You can see information at rebuildermedical.com
This is a small unit similar to a TENS unit. You would probably have to buy it
whereas you can get a TENS by renting one. Some insurance programs,
including Medicare will pay for the TENS, if you get it prescribed properly.
It’s my understanding that the ReBuilder can be paid for by insurance
also but the company prefers not to. See their web site for this information.
I first had a TENS, by recommendation of a visiting physical therapist
a few weeks after hospital discharge. It did no good at all and I returned
it very soon.
I bought and used the ReBuilder about a year later after much waffling
Their claim is that, as opposed to the TENS, it does not block anything
but instead mimics the natural “gate” signals of the nervous system
and therefore stimulates and helps heal the nerves. Well, maybe so
and maybe no.
The unit consists of a small battery powered box with simple controls
and wires leading to paste-on electrodes. Usage is not too expensive as
their electrodes can be removed and reused for about a month.
I used it off and on for a while but haven’t bothered in a while, largely
because I have gotten quite a bit better. It did seem to help some to
reduce the intense burning I have had. I think it would really depend
on your situation and unfortunately there is almost no way to evaluate
that with respect to this device other than to try it. It does seem to
me that if you are thinking of having electodes implanted, you may want
to try this first.
A big problem I had is that there is almost no guidance available on
where to place the electrodes. I eventually tried using anatomical
diagrams to find where particular nervous pathways approach the
skin and then tried to put one electrode at each end. As I said before,
I think this device provided some relief for me but I don’t think it
AnonymousApril 12, 2010 at 9:51 pm
Last year in April, my neurosurgeon decided it was time to implant a neurotransmitter for my CIDP pain. I have gone through all the medical therapies, at least the pharmacutical route without any luck. I suffer from both burning pain and also from stabbing pain. Looking back, I am not too sure I would do it again. See, it helped greatly with stabbing pain, but not at all with th e burning pain. I still haven’t gotten used to the constant electricity that is shooting through my body, so I don’t know if I would do it again. It is constant electricity and at times can be very uncomfortable. The best thing to do is a trial run. The only problem that the trial has is that the trial period is only 5 days. That is not enough time to judge whether or not it is worth having the stimulator implanted. Basically the benefit is just not worth it. At least not for me. I hope you get better results than I did, or that my experience helps a bit. Good luck……
AnonymousApril 12, 2010 at 10:33 pm
I’ve had a TENS unit used on me a few occasions over my 40 month period of GBS. It hurt me so bad i cried and screamed till it was off. So if the item your checking into is similar, now you know of a person it did not help.
Severe case 11-2006
AnonymousApril 13, 2010 at 1:17 pm
The device I mentioned is “surgically” attached to the spinal cord and is, or could be a serious problem. I have since talked to my Dr. about this and he has two patients who had this done and had to have them removed later on due to the pain and them not working for them. He said the chance is not worth it and they don’t work. I have long since decided against them. Not everyone can ,or will, put these things in for you. I would advise NO !!!
God be with your pain and stop it !
AnonymousApril 14, 2010 at 9:57 pm
I know of few folks who have implanted morphine pumps. It’s implanted near the back/spine area.They say it has given them back their lives. Once a month they get the pump refilled.
I tried the TENS Unit 4 times hoping it would help but it didn’t. Have seen the larger type units (about the size of a loaf of bread) for muscle spasm but don’t remember the brand name.
AnonymousNovember 13, 2010 at 1:51 pm
I have been looking into the stimulator route also. Just in the beginning stages. As we all well know what works for one of us doesn’t always work for the other. We have different types of pain even in our own bodies. We sometimes have the stabbing burning other times it may be shocks and cramps. So each individual definitely needs to research and try everything for themselves. There are different mfgs of the neurostimulators also so they are even different amongst themselves. I was told that that the leads are not placed directly on the spinal cord cause that was one of my first questions and fears. I was also told that the unit is totally controllable by me as far as I would not have to have it on constantly and I would have totals control over the level of stimulation I needed at all times. I have used the external tens for about 3 years now and for my type of pain it is very helpful. I too have the shocks stabs cramps type “normal” cidp pain when I relapse as well. But I also have constant pain in my calfs. I am on way too many meeds for the pain and still in pain so I am one of those who is down to the last resort. Besides the fact that I want off all these meeds. They make me feel awful. Somi am in process of researching talking etc. Going to get a second opinion at a different doctor in a week or so. I really think it is the answer for me but I worry about the risks cause I am one of those if it can go wrong it does. But if i did not have any of the possible problems like the slight risk of infection or whatever I think it will work for my pain and be my silver bullet. I will say my father (who is 80 years old) had one temporarily for a different problem related to the bladder and it worked like a charm for him and he loved it. His problem resolved so he did not have to have permanently installed but will if the
problem returns. So as I said it depends on the individual but be careful and do full research for your dr the unit they want to use etc. I am still doing research but as I said for my particular case it is probably the right way to go.
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