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 06-14-2018, 08:03 PM #1
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Quote:
Originally Posted by swampcricket View Post
its been awhile since i last posted. so here is an update on on the amputation. On May 24th 2016 i had my hand amputated they did a trans radial amputation. While in surgery they put a prosthetic hand attached to my cast to help with the way the brain thinks. i wore this for about two weeks i was able to operate it with my shoulder the hand would only open and close at this point. Also during surgery they did TMR (targeted muscle regeneration). I spent 6 months in therapy. I stopped all my medications at the end of the two weeks when the cast was removed. i was placed in another cast without a hand on it for two more weeks. I was fitted for a prosthetic at this time. now it has been just two years since the amputation i'm completely off all medications and have no problems with the RSD. i have had phantom pain occasionally in the area where my pinky was but this has only happened a few times. i seen my hand surgeon every three months to make sure everything is going good, now i see him every 6 months. that will drop to once a year in December. I would say that i'm 90% percent back to normal. I use my prosthetic everyday with out problem. I know a lot of people are against amputation but it helped me. this is the best i have felt in the last 5 years since i was diagnosed with RSD. if anyone would like to discuss this any further please let me know.

Was this surgeon a specialist in RSD/CRPS, and these a some new techniques to head off any issues going forward?

If you would like to, please make a new thread and tell more about this for members reading and for future members...
If this is is some new treatment option that hasn't been posted about here yet, we'd like to have the information available..
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Old 06-17-2018, 05:00 AM #2
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Originally Posted by Jo*mar View Post
Was this surgeon a specialist in RSD/CRPS, and these a some new techniques to head off any issues going forward?

If you would like to, please make a new thread and tell more about this for members reading and for future members...
If this is is some new treatment option that hasn't been posted about here yet, we'd like to have the information available..
Yes it sounds very interesting, and might be worth considering for those in pain that can't be otherwise resolved (by conventional means like medication or stimulators).

I do still think amputation is a long shot, my personal 2cts, but some techniques differ from others and OP is the living example of something gone *right*.
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- RSD both legs (late diagnosis, almost 3 years into RSD) & spread to arms/hands as of 2008
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Old 07-19-2018, 09:32 PM #3
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I'd give up my hand in a moment for relief.

I've been warned that amputation usually makes it worse and no surgeon will touch it. For a long time doing it myself was "plan B". Sometimes it is completely successful so it always seemed to be an option.

I'm pleased it worked for you and you seem to have had a very successful surgery.
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Old 07-25-2018, 06:30 AM #4
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Originally Posted by Imahotep View Post
I'd give up my hand in a moment for relief.

I've been warned that amputation usually makes it worse and no surgeon will touch it. For a long time doing it myself was "plan B". Sometimes it is completely successful so it always seemed to be an option.

I'm pleased it worked for you and you seem to have had a very successful surgery.
I personally don't think I could. I went through all stages (almost 3 years before diagnosis & treatment) and am in excruciating pain were it not for the medication. During those 3 years I didn't get anything for pain relief.

My "pain plan" was only established 2004. And I have this since 1995! So you can imagine. At the time it was also far more important to treat and see what possibly still could be done (nothing unfortunately).

I never *ever* thought of amputation. Yes, I wanted to get rid of the pain, but... never my limbs. Odd how that is different for everybody!

It is a controversial topic, IMMHO. Everyone does what's right for him / her, there is no right or wrong way to go about this.

We are all so different!

Good luck to OP!
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Work related (car) accident September 21, 1995, consequences:
- chondromalacia patellae both knees
- RSD both legs (late diagnosis, almost 3 years into RSD) & spread to arms/hands as of 2008
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