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 04-08-2009, 08:56 AM #6
dealingwithtos dealingwithtos is offline
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Join Date: Jan 2007
Location: Midwest
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dealingwithtos dealingwithtos is offline
Member
 
Join Date: Jan 2007
Location: Midwest
Posts: 192
15 yr Member
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Hi Marleen,

I agree with Denny and have similar stories. I have RSD in my arms. I got the SCS implanted in November of last year. It has taken away all of the sensitivity of my arm. I do still have some of the heaviness and a spasm once in awhile, but for the most part, I'm glad that I got the SCS. To put it in perspective, it takes away 80% of my pain.

I wasn't on any narcotics (except after the surgery) for about 3 months. Then I started to have pretty severe pain, sensitivity and burning in my back. I really do think iI now RSD in my back, but when I saw my pain specialist/surgeon in February, she said to give it 3 more months of healing. Well, the pain is so bad now I'm on 2 oxycodone at night. I have another appointment with her next week to see if there something structurally wrong or if it is the RSD.

So, I have to say, while it has spread to my back (or I think it has), the stimulator does work wonders.

I do also agree with the shocks. If I turn my neck, look down, etc, I get a singe - for lack of better words. If I had it turned up higher, I would get a shock. Because the leads are up at the base of my neck, it works better for me to have it set low. Let me give you an example: My stimulator goes from 0 to 10. It goes in .05 increments. So, mine is set to .35 - not 3.5 - .35 That's how low I have it. It takes away all of the sensitivity so I can wear shirts now without pain patches. But, I have been told that if you have it in your legs, higher stimulation is possible. I have a friend that has RSD in her leg and she has it set to 7

SCS's are a very personal decision. Oh, I forgot to tell you. In the US, you are required to have a trial of the stimulator (along with all of the other things that people have said on this thread) - which they implant for 4 or so days. You can then get an idea of what the stimulation feels like. When I had mine implanted, the cost was $52,000. I think the trial was $12,000.

I hope this helps.
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