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 02-09-2010, 05:06 PM #7
corinne89 corinne89 is offline
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Join Date: Mar 2009
Posts: 13
15 yr Member
corinne89 corinne89 is offline
Junior Member
 
Join Date: Mar 2009
Posts: 13
15 yr Member
Default I've been to Swedish's pain group

I have seen Dr. Irving (who is the clinical director) at Swedish's pain management group. One has to be referred in order to get an appointment there. He seemed to be caring and confirmed my need for the meds that I was on. Even if I came out of that appointment just having a written confirmation from the "experts" that what my doctor is already doing felt validating. Since the knowledge here in Seattle is so poor, I live in fear that my main doc (who does understand this fairly well) will get hit by a bus by accident one day and I'll be on my own. Dr. Irving was quite knowledgeable about chronic pain, and does have some RSD patients. The thing to note is that the pain clinic will not function as your provider for meds after they figure out a protocol. You are then sent back to your primary doc (with occas. follow-ups with the clinic). Even though my RSD is in 3 limbs, my trunk, neck, side, and back (with a lot of internal issues as well), he was geared towards a SCS for me which scares me to death. I worry when I see the poor rate of long term SCS success for RSD'ers (vs. other chronic pain) as well as the long term commitment of $ involved. Every time something invasive happens with me, the RSD spreads. I just don't think I could handle it if I "made" myself worse, so surgery is out for me.
Corinne89
P.S. Leather, It just dawned on me I have seen Dr. Li. He told me that he was not functioning as a regular neurologist, and his scope of practice was limited to implanting and maintaining hardware (SCS and pain pumps). Has he changed?

Last edited by corinne89; 02-09-2010 at 05:10 PM. Reason: Missed a thought... :0
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