Spinal Cord Stimulator?

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Spinal Cord Stimulator?

Postby princesk8 » Wed Jan 25, 2012 7:09 pm

I see from previous posts some of you have them and love it. My doctor suggested I think about this if nothing else works. Can they stop working after a certain amount of time? I know they are not for
everyone, I'm just not sure yet if I'm ok with this idea. I have new MRI's coming up and if there has been no change and the fiddling around with my Lyrica dosage doesn't work, then I guess I will have to see.
May have to try Amitriptyline, but since gabapentin and lyrica both make me tired not sure if that is a good choice either.

I don't think I'm a candidate for decompression surgery since neuro says my major symptoms are from syrinx. Surgeon says that there wouldn't be enough room to shunt the syrinx either and that would be a
last resort if it gets worse.

Every time I ask about working reduced hours, even just a little (35 hrs) so I can get the amount of sleep I need and avoid any kind of surgery they just look at me like I'm asking for the impossible
Regardless of all this, I'm trying to smile and stay positive. Any input is appreciated. Have a nice evening! :P
Chiari 1 7 mm & Syrinx C5-T10. Scoliosis(22 degree L & 20 degree T curve). 2.4 cm Arachnoid Cyst at lower left occipital lobe. Bulging Disk C5-C6, C6-C7 & L5-S1. Early facet arthrosis L2-L4. Mild inferior foraminal narrowing L4-S1
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Re: Spinal Cord Stimulator?

Postby razzle » Thu Jan 26, 2012 5:44 am

sorry cant help with a stimulator , but do know ameritripline also makes you sleepy , it is good for pain... R
Once you choose hope, anything's possible.

Roz( Razzle51 or Rosalyn
Iowa
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Re: Spinal Cord Stimulator?

Postby June » Thu Jan 26, 2012 6:11 pm

I had a spinal cord stimulator (SCS) implanted to relieve pain from SM. It seemed to work well for several months and then just didn't any more. I fussed with it for a year and finally had it removed.

My husband has a SCS implanted to help with Parkinson's symptoms, and so far it is working really well for him. The surgery was completed last April--so not quite a year. Different doctors, different support staffs, but here are some of the things I have noticed after going through the experience myself and then observing him go through a similar process:

He has had MUCH more intensive therapy, training, and follow-up than I had. He worked with a team of doctors at University of Colorado Medical Center that specializes in movement disorders and deep brain stimulation (DBS) surgery. The SCS therapist is a team member and employed by the medical center; she has an excellent reputation among people who work with neurostimulation. It took me a year to find a doctor who would implant a SCS for me--that old problem of no one knowing about syringomyelia or being afraid to treat it. At least the first two doctors I went to were honest with me and didn't just mess me up. The third doctor, a neurosurgeon who claimed to have worked with other SM patients, was confident that he could help me, so I started the testing procedures.

It seemed to work, so I went ahead with the implantation, had three follow-up sessions of training, and then was on my own. I was given a phone number to call if I had problems--supposedly Medtronics, maker of the stimulator--but the one time I called the number, I was told to just call my doctor's office and make an appointment. The therapist who trained me worked for Medtronics--not my doctor. I should say here that my doctor also worked with Medtronics to develop the stimulator. When I began to have problems, I re-read my instruction booklet, changed batteries, did everything I knew to do to make it work--then went in for an appointment. It didn't seem to help. After watching my husband's therapist and relating her training and treatment to what I got, I can now see why. My therapist either didn't know enough or was not willing to spend the time with me.

So it is impossible to say whether my SCS might have worked better if I had had better follow-up treatment--or maybe they just don't work well with SM. I don't know. Much more is known about Parkinson's than about syringomyelia, so it is not a fair comparison. This is just my experience, for what it is worth. But I would say, if you are going to try it, get a good doctor who has experience with SCS implantation and support staff who know how to set your stimulator and train you to use it--and are willing to stick with you until things are working well. I suspect as doctors learn more about SM and SCS, we'll see more success with these things. Meanwhile, Medtronics and other companies like them are making lots of money but not necessarily helping patients.

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