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 06-16-2012, 09:29 PM #1
zenonang zenonang is offline
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Confused SCS Revision for RSD/CRPS

Hi Everyone,
I was curious if any of you have ever undergone a revision of a cervical SCS. I was diagnosed with RSD 5 years ago and it has spread to various limbs in my body. In an effort to deal with the extreme pain I have in both hands and arms, I had a SCS implanted 2 years ago, but it does not give me good coverage. My new Neurosurgeon would like to do a revision, changing the type of SCS I have so that there are more leads within the paddle and he is going to take a different approach to implanting, going down and in versus up and in which my former Neuro did. I have to make a decision by Tuesday, and I am leaning towards having it done, but I was curious if anybody else has had such an experience. Have any of you with an SCS ever undergone a revision? Was it worth it in the long run?

Thanks for any who can shed some light on this situation!
Angie
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Old 06-17-2012, 07:39 PM #2
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Angie I would like to suggest you place ur thread on scs/pain pump site. They have alot of experience with this and can probably helP you.
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GOD help me be faithful in the midst of my suffering. Alt1268
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Old 06-17-2012, 10:45 PM #3
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Thanks so much. I posted there now too. I did not realize there was a completely different section over there as well, so much to learn as I am trying to figure out this great community of support.
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Old 06-18-2012, 06:06 PM #4
Gingieyael Gingieyael is offline
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Hi Angie,

I've had 4 SCS revision surgeries. My first SCS was an ANS (now St. Jude) and it worked really well for me until the leads moved in my epidural space, and the stimulation covered the wrong place. I then decided since it worked so well to have revision number 1, my surgeon was concerned about SCS fitting in because I'm really petite, and because of scar tissue. He measured all the SCS on the market and decided to go with the smallest, which at that time was Medtronics.

Ever since day 1 I've had issues with my medtronics SCS. It wouldn't charge properly, so the battery would die and the stimulation was never right for me, felt nothing like the ANS stimulation that worked for me. Long story short, I kept trying to make it work and it didn't. It's been dead (battery issues) for 3 years now, and I'm just waiting until I need another surgery to have it ripped out.

Please don't get me wrong, I was happy with my SCS at first, but I would encourage you to really research whichever brand you go with to make sure they don't have a history of problems.

Wishing you lots of luck and pain free happiness!
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