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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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01-31-2015, 08:56 AM | #1 | ||
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When I was first diagnosed one of my doctors recommended a variety of exercises to be done with the lumbar sympathetic blocks. One of the things he put in my treatment plan was contrast baths. If I had not researched it and seen what others have shared I would have done it without thinking twice. That made me realize what everyone has been sharing, you need to be your own advocate.
On a side note I have been searching for a new PCP (insurance issues plus I did not care for my previous PCP) and it has not been easy. The doctor I saw last week told me to get two big buckets of rice and stick my legs in there and move them around. I will admit I have heard of rice being used as part of desensitizing therapy. However he told me that if I do this every day for 3 months I would be cured of my CRPS and would never have to worry about it again! I will not be going back to him, even though I was thinking about putting together some information and articles in an attempt to educate him! |
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01-31-2015, 09:23 AM | #2 | |||
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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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01-31-2015, 11:13 AM | #3 | ||
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Magnate
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01-31-2015, 12:39 PM | #4 | |||
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Quote:
Littlepaw |
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"Thanks for this!" says: | birchlake (01-31-2015) |
01-31-2015, 11:40 AM | #5 | ||
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Magnate
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And while I believe in the idea of the power of positive thinking, being told this med or that procedure will cure you loses meaning pretty quickly as you're repeatedly crushed when those miraculous results fail to transpire. |
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"Thanks for this!" says: | visioniosiv (02-01-2015) |
02-01-2015, 10:23 PM | #6 | |||
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Certainly not a cure in and of itself, but an interesting recommendation. This could actually be a great recovery tool for someone in the early stages(!)
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