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 02-28-2011, 02:11 PM #1
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Default Radio Frequency Ablation (RFA)

Has anyone with CRPS-II had an RFA procedure? My pain management team has recommended this for my next action, and I've scheduled it, although I'm still very unsure. For one thing, I can't participate in the clinical trial if I've had an ablation. For another, research seems to be very mixed.

I'd love to hear first-person experiences with it.
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Old 02-28-2011, 02:42 PM #2
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I have CRPS type 2 with the CRPS currently located in both hips and through out the entire legs to my toes.
1.5 years ago I was seeing a dr that recommended the RFA after 3 nerve blocks failed to provide any long-term relief. I happily obliged as at that point in time I still blindly trusted Dr's.
The RFA procedure itself was a nightmare! It was so very painful and the procedure requires the patient to stay awake. After the procedure was completed my CRPS was flared ten fold and spread quickly. The extra pain never went away and this procedure made the disease spread to an unbearable level.
I'm not the only one who has had the disease spread from this dreadful old school procedure. Please reconsider as I would not recommend this procedure. If my added pain and lesson learned from the procedure can educate others with the same struggle then I feel at least the experience has some sort of positive outcome. Please let me know if you have any questions and I hope what ever treatment you decide to do works well for you.
Sarah
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Old 02-28-2011, 02:49 PM #3
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Sarah,

I suspected as much. I am glad to know that my suspicions are not unfounded.

I am awaiting entry into the clinical trial and pray that it goes through.
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Old 02-28-2011, 09:54 PM #4
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You will be in my prayers as I truly feel for you. In the mean time I hope you find some sort of relief from this unrelentless disease. Keep me posted as to how you are doing as you will be in my thoughts.
Sarah
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