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 01-28-2010, 03:41 PM #1
sukadog sukadog is offline
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Originally Posted by rsdwife View Post
[ sukadog
My husband has rsd in left arm/hand. He had a scs implant in Dec. He has no regrets. I have seen some on here that it was not successful and others who have had it for many years and love it. My husband is off all his pain meds, however there are limits to what he can do (not lifting over certain weights, not lifting things over his head). He feels it was the best decision for him. The pain meds restricted a lot of things he could do anyways, as he didn't really get great relief from them and they goofed his head. Each person has to decide what they are willing to live with and what gives them the best quality of life. I wish you the best!
Thank you so much! That's very encouraging and I'm glad it's working for him. Can you tell me a bit about precautions: whether he can go to stores that have theft detector gates? Can you use a microwave at your home? I know these are silly little things compared with the possible benefits; I'm not concerned about giving anything up, but about whether little things can interfere with the device. Thanks again!
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loretta (01-28-2010)
Old 01-28-2010, 05:05 PM #2
bassman bassman is offline
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Originally Posted by sukadog View Post
Can you tell me a bit about precautions: whether he can go to stores that have theft detector gates? Can you use a microwave at your home? I know these are silly little things compared with the possible benefits; I'm not concerned about giving anything up, but about whether little things can interfere with the device. Thanks again!
I have had an SCS implant for my left foot since 2003. Everyone's results are different, and I was 1000% sold on it when it first went in, but after a short while, the effectiveness ore off. I was told that happens sometimes - that the body "rewires" itself to get past the SCS stimulation and you go back to the same ol same old.

I can tell you, though, that the precautions you asked about are minimal. Microwave ovens are not a problem, nor are regular stores. I always (as a preventive measure) turn off my stimulator when I go shopping, especially at a mall where I will be in-and-out of stores a lot or if I will be going to a jewelry or leather goods store where they have their security cranked up a bit.

I have heard that some people leave theirs turned on while shopping with no problem.

I never allow the airport security to use their wands on the stimulator (or make me walk through the hoop.) I always ask for a hand-screening. The biggest chance of any problem would be damage to the unit, and then trying to get insurance to replace it. (Not to mention another surgery.)

Good luck with your decision.

Mike
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Old 01-28-2010, 06:33 PM #3
krank krank is offline
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I had a scs trial done last month. I have the little monster in my right leg, foot, ankle and now hip. They tried to use two different leads, one for the ankle foot area, and one for my hip. This didn't work for me. I tend to have problems when it comes to anything vibrating on my leg. It really doesn't matter what it is, be it from riding a lawn tractor or driving. So making a long story short it didn't work out for me. I couldn't control the vibrations and it turned my foot and ankle purple. I guess I'm just an odd duck. I hope and pray that you will have a better experience with yours. I would recommend an scs trial for anyone that knows their doctor is competant. I just ran into a very money grubbing one.


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Old 01-28-2010, 07:10 PM #4
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I've been reading, and even tho my back is sore from surgery, I just had to add my 2cents worth. As you know, I have had 2 units. It did, for me, cause the rsd to spread. I loved the trial, but never was happy with the perm. THe first one I had, the leads pulled out, and the battery started to rotate and caused a lost of pain. I now have the pain pump, and I'm the happiest I have been since I developed this monster 5 years ago. I had the trial in Dec 1st. in hospital for 5 days. That's when we discovered I'm allergic to Morphine. (good thing to know). They switched me to Diluidad which worked great. I now have the perm unit and it only involved a small cut in my back where they put both the caths and the resivouir. I'm off all oral meds except for percocet which I have for surgical pain. I've had no problems at all and I feel almost like I did before the rsd hit. With the scs I was told I couldn't ride my horses, had to be careful doing barn work, etc. with the pump, I can do almost anything. I do thing bungie jumping is off limits. As there are no leads to pull out I don't have to worry about doing everyday things. for me, everyday things, include riding my horses, running around on the tractor, lifting 50 lbs feed bags and 80 lb bales of hay. I was not going to be able to do any of that with the scs. I'll be riding by summer. yeah..........
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Old 01-29-2010, 05:57 PM #5
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Quote:
Originally Posted by sukadog View Post
Thank you so much! That's very encouraging and I'm glad it's working for him. Can you tell me a bit about precautions: whether he can go to stores that have theft detector gates? Can you use a microwave at your home? I know these are silly little things compared with the possible benefits; I'm not concerned about giving anything up, but about whether little things can interfere with the device. Thanks again!
I have not heard anything about microwaves interfering with the unit. He has yet to set off any detectors, we even had to take care of some business at a federal court house and it didn't set it off, he did hand the security guy his card that was issued to him proving he had a device just in case. He has not had his rsd spread at all. He actually turns it off at night and then back on in the morning. Their are several different settings that the scs company rep can program into the device. He also went for the non rechargable unit. With it being in the upper extremity, for some reason it doesn't need to be turned up so high, so the battery is expected to last up to 5 years. The replacement surgery is suppose to be minor. Again, everyone does have to make thier own personal choices, I justed want people to know, that for some it has been a wonderful tool in pain relief.
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