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 06-02-2014, 08:22 AM #1
Burnbabyburn Burnbabyburn is offline
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Join Date: May 2014
Posts: 78
10 yr Member
Burnbabyburn Burnbabyburn is offline
Junior Member
 
Join Date: May 2014
Posts: 78
10 yr Member
Default RSD/CRPS SURGICAL PROTOCOLS..help

Hello
I did start another thread a week or two ago, & am VERY grateful for the help and advice I am getting. SO grateful for Tessa and VRAE etc. TY!. I'm inching up on setting a surgery date for hip replacement. I need to see PM this week and set date. I currently have RSD in LEFT leg, LEFT wrist/hand, and it affects other body parts, but it is heavily on left side. MY HIP SURGERY IS ON RIGHT SIDE.

For anyone who has had surgery WITH RSD present, or who has contracted RSD directly from surgery, & had to have more surgery, what protocols did you have done before your surgeries to prevent more spread or RSD? This is inpatient HIP SURGERY! And I have other health issues, connective tissue, fibro etc. If you could have your doctor write down a protocol to follow, what was it? I am looking for a few sentences, paragraph, or step by step procedure to follow so that I can try and tell my surgeon, PM and anesthesiologists what I would like them to do in the easiest, most clear way. Just to say that I need extra care, or this or that, casually, is not enough. I know no one thing is standard, and there are no SET protocols, but what did you have done for you?????

I am stressing a little as I narrow down on making surgery date and talk to my PM tomorrow. From your experiences, what did work, what did help, what steps did they follow pre, during, post op if you were admitted for serious surgery, not outpatient.

FOR EXAMPLE: this is the type of language I am looking for....

"Patient x has a medical condition(s)_____, and ____which require careful/aggressive/additional pre and post op pain management procedures. It is highly recommended that prior to surgery, patient x is admitted to the hospital 24 hrs before surgery for a ______ (epidural cath...etc) and ___. Patient x has RSD in ___ limbs which should also be monitored (whatever) Pre op patient should be taking, ___ med, surgery should be done with IV, cath, etc using ____meds, and (any kind of blocks suggested) During surgery, (precautions), and post op patient will need an IV cath (whatever is recommended) kept in place for 5-6 days, alone with lidocaine, KETAMINEm blah blah, and blah lbah meds to reduce to chance of spread, whatever. Patient will likely need extra 3-5 days in the hospital based on __- and ___ conditions.

I know I rambled, sorry, I woke up tense and nervous about moving forward...but you get my drift. I am looking for guidelines so my PM and i can have a written protocol. I have contracted RSD twice each directly from surgery, and this has been 25 plus years of RSD. Surgery is always the event that leads to RSD for me. Brutal, scared, a little freaking out because no protocols were followed for me except a nerve block pre op, and it was useless and i came out with full blown RSD 24 hrs later. Aggressive treatment post surgery and diagnoses did nothing, so yes I AM shaking in my boots, lol, ready to barf worried about being unprotected.

Anyone who has had this, can you please, in guidelines or instructional terms, suggest what your letter would say to your insurance, docs, anesthesiologists????? My fear is if I go in with only one plan, and they don't like or do that plan, I want to be able to have a few options and tell them that I know xyz people who followed zxy protocol and reduce spread or avoided spread. Please help....Did you have a written protocol?

Excuse my typing and rambling, I am going on no sleep and crazy pain night...for like 6 months, lol.

HUGS TO YOU ALL!!!!!!
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