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Old 05-09-2009, 09:24 AM
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Rita Rita is offline
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Join Date: Aug 2008
Location: the Blue Grass State
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15 yr Member
Rita Rita is offline
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Join Date: Aug 2008
Location: the Blue Grass State
Posts: 73
15 yr Member
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Quote:
Originally Posted by bassman View Post
Regarding the size of the SCS, mine is a Metronics unit, about the size of a cigarette pack, but only about 3/8 in thick. At the time it was put in, I questioned the placement because I really don't have much padding there. The doctor and Medtronics rep assured me the "they were all installed in that spot" even though their own literature suggested the abdomen was another location that is common. About 18 months later, a different neurosurgeon looked at it and said he would have never put it there. It's really not an appearance problem. (My wife says it's hardly noticeable even though it feels like it is a huge lump.) But rather, the pressure of it poking my skin creates more pain that it is worth at times. The anchors that hold the leads into the spinal column were also not driven into the vertebrae deep enough, making another sharp point from the inside.

The SCS worked pretty well for me for a while. I had it implanted in 2003, and it was placed to hit my left lower leg and foot. I was really glad I had it. After about two years, one of the leads stopped working. The Medtronics rep could not get it going and said it would need to be repositioned when the SCS was replaced. Starting about a year later, it seemed that the SCS was more annoying than helpful. My RSD also began spreading, after 20 years, to my other leg and up into my shoulders. The SCS was not placed to address those areas.

As of now, I still have the SCS but turn it on only during the worst flares, but it really isn't doing much. I would probably get the insurance company to approve me to get another. I am still unsure if I want to try an updated model, installed by a better surgeon, or have the thing removed altogether. It would sure make flying easier than trying to explain it to TSA agents who never heard of the device.

There have been lots of discussion threads about this. Many people have been extremely satisfied. Take lots of time to research it before you plunge ahead to do this.

Mike
Hi Mike,
Reed also wonders sometimes if it was worth it. He's having more pain in his back recently. It also swells..not like an infection, and not exactly where the battery or leads are. I sometimes wonder if he's not experiencing spreading. I sure hope not!
His battery is small, but he has no rump.. so it does stick out a bit. His leads, where they looped them to help hold them in place, stick out too, and that's where alot of his pain is coming from. He says it pinches and his back burns. The PM doc is talking about revision if they can't get a better re-programming. I'm not sure Reed will go through that again. He got tremendous relief from the SCS at first, but once those leads moved the tiniest bit, he got hardly anything, and it's been reprogrammed 3 times with little improvement. anyway, hope things are well for you and your family.
hugs to all!
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