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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index

[QUOTE=scioladyohio;4667647]Hello. I too have been considering having my scs removed. My rsd originally started in my elbow; went to my hand where then they convinced me that in so many percentile that the scs would stop the rsd from moving. Well either the leads are laying on nerves in my shoulder or the rsd is there now too. I too cannot turn the stimulator on for any long length of time; I walk around looking like my head is trying desperately to get away from my shoulders. I'm going to make a decision before I see the dr. at the pm. I too had the double paddles put in my neck. I also get neck pain from the scs. I look forward also to anyone who has had the lamectomy & then the scs; paddle, etc removed. The pain management dr. sent a report to workman's comp saying pain meds were also were not a "long term fix" whatever. wish i didn't need a pill one; worried what the neurontin is going to do to me longterm too. worry, worry. Know how you all feel out there. :dizzy:[/QUOTE]
I'm actually going to be on narcotics the rest of my life (it's not RSD in my case but a neck injury from my Navy days). I'm trying to wean myself off neurontin as we speak because of all the side effects and clashes with other meds. That being said, it's not going well, and my pain level is way up (I am down from 3200 a day to 2000 a day right now).

As to removing the lead from your neck, the calculus that two neurosurgeons (1 in Philly, 1 in Tacoma) gave me was that if the lead was causing no problems, it's best to leave it there. Once the lead is causing problems, it's best to remove it, and so sadly, in your case, it sounds like you're headed back to the OR as well...

Best of luck with it.

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