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 12-30-2009, 08:47 PM #9
SandyRI SandyRI is offline
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Join Date: Dec 2008
Location: Rhode Island
Posts: 1,056
15 yr Member
SandyRI SandyRI is offline
Senior Member
 
Join Date: Dec 2008
Location: Rhode Island
Posts: 1,056
15 yr Member
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Hi Jenna,

Welcome. I recommend you read as much as you can about RSD. Join the RSDSA, too - it's a great organization. And try to find the very best RSD doctor possible so that you can get proper treatment ASAP. It's so important to be diagnosed and treated properly by the right doc - you risk being treated the WRONG way or having your RSD spread if you go to the wrong place or wait too long.

In my case, I didn't receive any sympathetic nerve blocks for many months after being diagnosed with RSD in my shoulder by my ortho, and was instead injected many times in my cervical spine and occipital area with trigger point injections by a RI doc with little experience with RSD. As a result, my RSD spread to my neck and my head and I suffer from excrutiating head pain - I haven't been able to lay down on the back of my head for over a year and a half now. Be careful of docs that don't know what they are doing or don't have enough experience with RSD or are still reading textbooks from the 1980's...(see poor "Swatgen" who suffers from the terrible after effects from RFA). I later found a more experienced team in Boston and had my first stellate ganglion block Christmas Eve 2008.

One of the most knowldgeable posters here on this board is FMichael (IMHO). He has provided us all with great reference material on RSD treatments.

I would advise you to get to the nearest large university teaching hospital's pain clinic or a large city's medical center if you are able. Even better, Jim Broatch, of the RSDSA, will provide you with a list of doctors that provide ketamine, if you request it. Call a few of the doctors that are closest to you and arrange for a consult. Doctors that do ketamine for RSDers know RSD really well, and in my personal experience, are incredibly helpful and compassionate (except skip the Beth Israel in Boston - they are no longer taking new patients).

Good luck to you, and welcome. XOXOX Sandy

Last edited by SandyRI; 12-30-2009 at 09:36 PM. Reason: correction
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allentgamer (12-31-2009), Jenna Delaney (10-02-2010), loretta (12-31-2009)
 

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