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Surgery and the RSD Patient

Posted Aug 10 2009 3:34pm 1 Comment

I have RSD (Reflex Sympathetic Dystrophy) and although implants, from medication pumps to the SCS (Spinal Cord Stimulator ) , are sometimes very helpful with the pain, the drawbacks for RSD/CRPS patients is quite different than for people suffering chronic pain unrelated to their sympathetic nervous system.

"RSD can be triggered and spread to other parts of thebody by any invasive procedure. Surgery is the most prevalent, as in my case. Iwon't bother going into the particulars of these devices because they have been so thoroughly discussed".

I know they have helped many people and my doctors have tried repeatably over the years to get me to agree to several types of surgical intervention; from implants to actually wanting to amputate my right hand. I have resisted and the biggest reason is the likelihood of causing another spread to the remaining areas on my body not affected by RSD.

For too many doctors, surgery is their way of "treating" RSD/CRPS (although both terms are used interchangeably, there are differences). Either cut off the offending limb or continue to implant these devices when it is a well know fact about all of the problems this can cause for the person suffering from Reflex Sympathetic Dystrophy.

Reflex S
ympathetic Dystrophy (RSD/CRPS) patients need to think very hard before allowing these devices to be implanted. Even a blood draw, a tiny single needle stick can and does spread RSD every day. What started out for me as a thumb with RSD, is now in both hands, arms, legs, and jaw. I can neither use my hands, walk or talk many days. I require a caretaker, who even has to cut my food before I can eat.

I suffer excruciating pain every day due to this neurological condition and no way in this world will I let another doctor operate on me unless it necessary to save my life.

What is good for one medical condition, is not always as helpful with another.


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I had a SCS implanted several months ago (at the recommendation of my pain mgmt dr).  I have had RSD for over 7 years on my left side (rib cage area) wrapping around to the front.  For 3 weeks I felt better than I hand in years (even with the SCS, still needed reg pain meds) it was wonderful.  There was pain from the battery site but we all figured that would subside as it healed.  That was in April, after those 3 weeks the scs stopped easing any of the pain and the pain at the battery site kept getting worse and my regular pain meds did nothing to help with that pain.  Lidoderm patches help with the pain to make it bareable.  I am scheduled to have it removed early next week.  Don't let anyone convince you to have it implanted.  My neurologist said that some people are more likely than others to have the RSD spread and that when that is shown to be the case -- any surgeries or invasive procedure will likely cause the RSD to spread.

 Good luck!

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