Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

 
 
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Old 08-14-2008, 06:23 PM #10
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Lynns409 Lynns409 is offline
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Lynns409 Lynns409 is offline
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Posts: 102
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Hi Mark!
Go for it! I have a lumbar stim and I cannot even remember how many revision surgeries I've had. Over 15 in the past 7 years. And after one of those I had a MRSA infection in the incision and had to have the entire unit yanked out and was in the hospital forever. But I had a new unit put in 6 weeks later, so that I would have a week and a half to recuperate before college started again. My SCS made it possible for me to graduate from college, UCSD.

I now have 2 leads- a laminectomy, which is a lead directly wired into my spinal cord through a hole where bone has been removed, and a lead that is anchored by a large metal anchor to the tissue that surrounds the bone. My battery is now contained in a special Dacron (similar to kevlar) pouch that has become intertwined with scar tissue to prevent the battery from migrating. It would move and press on my hip bone, causing intense pain and swelling in the joint. It has been a really long road and process. The year that I had the infection I had surgery four times that year. I had surgery three times a year throughout college- winter, spring and summer break most of the time, even though I was extremely careful with my SCS. But when it is working, I can function. So I will go through just about anything to keep it working. When it isn't, my levels of pain meds go up, and I hate that. The groggy fuzz that you live life through. I would rather 2 or 3 weeks of surgical pain for a much better quality of life the rest of the time.

My point is this-- it is so worth it. A lead can be removed anytime. Neurosurgeons are amazing creatures. Scar tissue can limit the area of coverage on subsequent implantations, but a good surgeon will work for you and find it. An SCS will help you so much. Go for the new lead! If it's what you want, go for it! We're supposed to be here to support you, not warn you off of something that is going to make your life better. It's just like anything else- it takes hard work to get what you want and you probably aren't going to get something for nothing. Oh, and you will feel the wires under your skin. The actual leads dive deeper and lay next to the spinal cord. So it is normal to be able to feel the wires. Freaky, but normal. I think it makes us special!

Hope this helps. Any questions, feel free to ask!
Lynn
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