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 01-31-2015, 09:23 AM #1
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Hello All, There are some great comments here. Thank you! All so true. I have a note on finding docs in general. I have been the lucky gal who always ends up in the 5% - who rupture, who need rare surgery, who grow a massive fibroma and need radiation for a condition commonly treated in Europe that way but not here. Yeah me for being special.

I have had to find a variety of experts to deal with outcomes that "don't usually happen". This means the guys who take care of the 5% and are up on the latest for weird conditions. I have solved this by doctor shopping. So tedious but worth it. I start by looking at a group of specialists' CV which are often on their webpage. I have leaned towards those who did fellowships at large academic centers I respect. They have had a better chance of seeing things at a tertiary referral center and competition to get a fellowhip is fierce. My surgeon trained at Stanford in microsurgery and peripheral nerve at Washington U in St. Louis at an excellent nerve program. The training gave me confidence and he DOES know what he's doing. More than I can say for some of the hacks I have encountered. Because he's on a lower exremity restoration team I ended up finding other docs I trust through him. I travel 3 hours to Medical City in Houston to see three different specialists. It is absolutely worth it. For me, even in a city as large as Austin we just don't have that kind of care, damned town's grown to fast....

Sending Healing Love
Littlepaw
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Old 01-31-2015, 11:13 AM #2
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Originally Posted by Littlepaw View Post
Hello All, There are some great comments here. Thank you! All so true. I have a note on finding docs in general. I have been the lucky gal who always ends up in the 5% - who rupture, who need rare surgery, who grow a massive fibroma and need radiation for a condition commonly treated in Europe that way but not here. Yeah me for being special.

I have had to find a variety of experts to deal with outcomes that "don't usually happen". This means the guys who take care of the 5% and are up on the latest for weird conditions. I have solved this by doctor shopping. So tedious but worth it. I start by looking at a group of specialists' CV which are often on their webpage. I have leaned towards those who did fellowships at large academic centers I respect. They have had a better chance of seeing things at a tertiary referral center and competition to get a fellowhip is fierce. My surgeon trained at Stanford in microsurgery and peripheral nerve at Washington U in St. Louis at an excellent nerve program. The training gave me confidence and he DOES know what he's doing. More than I can say for some of the hacks I have encountered. Because he's on a lower exremity restoration team I ended up finding other docs I trust through him. I travel 3 hours to Medical City in Houston to see three different specialists. It is absolutely worth it. For me, even in a city as large as Austin we just don't have that kind of care, damned town's grown to fast....

Sending Healing Love
Littlepaw
Even the docs with the best credentials, aren't always trustworthy, unfortunately, but your advise is certainly a good place to start.
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Old 01-31-2015, 12:39 PM #3
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Even the docs with the best credentials, aren't always trustworthy, unfortunately, but your advise is certainly a good place to start.
Don't I know it!! The guy who graduated last in the class is still called Doctor. But yes you have to start somewhere, usually without much guidance. I know we all feel and do better when we take control of our recovery. No one is as invested as the patient.

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