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 10-08-2009, 07:26 AM #2
dealingwithtos dealingwithtos is offline
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Join Date: Jan 2007
Location: Midwest
Posts: 192
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dealingwithtos dealingwithtos is offline
Member
 
Join Date: Jan 2007
Location: Midwest
Posts: 192
15 yr Member
Default I also have a SCS

Hello,

The first thing I thought of when I read your post is to try to STOP, take a deep breath and chill....being worried will make your pain that much worse. (I know that's easy for me to say)

The second thing I thought of is to give yourself a break here. It's only been less than 2 weeks. You just had major surgery.

Ok....

I had my SCS implanted a year ago August. It takes a long time for your body to adjust. Your nerves are screwed up right now. It took a good 9 months for my body to heal and feel better so that I could function as close to normal as I can. (I work FT)

So, when you say your back/hip is hurting - is that from the battery and the insert area of the leads? If that's the case, I'm not surprised. I couldn't lay on my back for 6 months after my surgery. It just needs time to heal.

As far as stimulation, they need to change the stimulation in your leg - it's a trial and error process. I have gone back about every 3-4 months to get reprogrammed just because I couldn't get the right coverage. It takes time. I would think I had the right coverage and then when I get home, I notice that it was better how they had me before I got reprogrammed... You just don't know until you live with it a few days. Especially now when things are so new.

The other thing I wanted to mention is that you don't have to feel the sensation for it to be working. Now, if it isn't taking care of the pain, that's one thing, but just because the sensation isn't there doesn't mean it isn't working. My leads are in the base of my skull because I have the RSD in my arms. I don't feel the sensations all the time. When I arch my back, bring my leg up, slouch, etc. I do. That doesn't mean it isn't working. Secondly, I don't know if this applies, but the stim doesn't take care of muscle issues. If you're spasming, feel like your legs weigh 1000 lbs, the stim won't take care of that. It's only specifically nerve pain.

I know your wondering - all of this above is wonderful, but what do I do now?

I would get snuggled in my chair (or on the couch) - take the percocet (don't feel bad) - and watch a movie or tv. Give yourself time and wait for that appt (hopefully not long) where you and the programmer can sit down and sort out why you're not getting the coverage you need. If that appt doesn't make things better, make another one. You might want to make an appt right away when you're with the person. Make it a month from now or so. Or 2 weeks... If you need to cancel - great...

With me, the more I worry, the more I hurt. There's nothing you can do until you have that appt. I've been there.

I'm sorry you're in so much pain right now. Please give us an update as to how you're doing.

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