1. < Brain & Nervous System

I have RSDS/CRPS (reflex sympathetic dystrophy syndrome/chronic regional pain syndrome)

Posted by Erma @paradiserealm, Jan 19, 2015

Hello everyone! I'm Erma, I live in Utah and I have RSDS/CRPS (reflex sympathetic dystrophy syndrome/chronic regional pain syndrome for those of you that don't recognize the acronym). I acquired the RSD after my right arm was nearly amputated when I flipped through an old, patio, plate glass door. The glass severed my artery, nerve trunk (Brachial Plexus) and tendon. I'm fortunate to be alive, however I am in constant pain!! I am looking for anything that will help, even amputation (last resort). It's been nearly eleven years, I have my third child on the way and I can't handle missing out on time with them. Anyone have any advise or heard of anything that may benefit me? Thanks

Interested in more discussions like this? Go to the Brain & Nervous System Support Group.

Deena | @mrsdeecee | Jan 19, 2015

My sister has RSD from a botched up tendonitis operation had tk dk with the sheath over the tendon being damAged, have you tried nerve blocks? She has it done in the Dr office, you will need a ride they lighly sedate ber and then they shot the nerve thats causing you pain and numb it ,she gors for a series of shots in 3 maybe 4 timrs a year she gets great releif google nerve blocks for RSD,I think not sure shoot her with tramadol aka ultram, good luck she has been getting nerve blocks for years an anesthesiologist. Do it you might wind up in hosp out paient will work Deena

REPLY
1 reply
Erma | @paradiserealm | Feb 20, 2015
In reply to @mrsdeecee "My sister has RSD from a botched up tendonitis operation had tk dk with the sheath..." + (show)
@mrsdeecee

My sister has RSD from a botched up tendonitis operation had tk dk with the sheath over the tendon being damAged, have you tried nerve blocks? She has it done in the Dr office, you will need a ride they lighly sedate ber and then they shot the nerve thats causing you pain and numb it ,she gors for a series of shots in 3 maybe 4 timrs a year she gets great releif google nerve blocks for RSD,I think not sure shoot her with tramadol aka ultram, good luck she has been getting nerve blocks for years an anesthesiologist. Do it you might wind up in hosp out paient will work Deena

Jump to this post

Thank you for your sweet response! I have only medicade and they do not<br />
cover nerve blocks. Hoping to try a stem cell treatment trial out to<br />
regenerate the tissue and get rid of some of the scar tissue that's causing<br />
me so much pain. I seen a woman get the use of her wrist back from doing<br />
it. Have you heard much about it?<br />
Erma<br />

REPLY
rsnowflake | @rsnowflake | Feb 15, 2019

Hi Erma, I'm Renee was diagnosed about 2 years ago. Started with a broken ankle. Then did a nerve block, it worked I thought it was over....Haha. jumped 2 my arm atrophy on my hand. Got gabapentin failed, nerve blockers failed... got and a spinal implant ended up and it saved my life. A lot of recovery pain still with stress and weather changes. I also use medical marijuana for sleep . If any of this is helpful or u want to talk please contact me!!

REPLY
1 reply
ursann2014 | @ursann2014 | Feb 17, 2019
In reply to @rsnowflake "Hi Erma, I'm Renee was diagnosed about 2 years ago. Started with a broken ankle. Then..." + (show)
@rsnowflake

Hi Erma, I'm Renee was diagnosed about 2 years ago. Started with a broken ankle. Then did a nerve block, it worked I thought it was over....Haha. jumped 2 my arm atrophy on my hand. Got gabapentin failed, nerve blockers failed... got and a spinal implant ended up and it saved my life. A lot of recovery pain still with stress and weather changes. I also use medical marijuana for sleep . If any of this is helpful or u want to talk please contact me!!

Jump to this post

Hello. I'm Ursula and developed the same after ankle surgery. Curious to know more about the implant. Do you have any hardware in your ankle? The surgeon placed a rod, four screws and a plate in mine. I have lost so much use of my ankle, it's changed my quality of life.

REPLY
1 reply
Lisa Lucier | @lisalucier | Feb 18, 2019
In reply to @ursann2014 "Hello. I'm Ursula and developed the same after ankle surgery. Curious to know more about the..." + (show)
@ursann2014

Hello. I'm Ursula and developed the same after ankle surgery. Curious to know more about the implant. Do you have any hardware in your ankle? The surgeon placed a rod, four screws and a plate in mine. I have lost so much use of my ankle, it's changed my quality of life.

Jump to this post

Hi, @ursann201f4 - welcome to Mayo Clinic Connect. That sounds difficult getting RSDS/CRPS (reflex sympathetic dystrophy syndrome/chronic regional pain syndrome) after ankle surgery and then having so much loss of use of your ankle.

Hoping @rsnowflake can talk a bit more about the implant. Is the hardware itself causing issues for you, @ursann2014?

REPLY
rsnowflake | @rsnowflake | Feb 18, 2019

@ursann2014 Hi it's Renee, after I had 2 titanium leads and a generator it is implanted in my buttocks, lol but true. The generator sends magnetic waves 2 the leads in my spine. Which I can control with an iPad. So depending on pain level I control the generator till I get the best results to help the pain. Unfortunately it is surgery on your spine and buttocks , so recovery is long. But your push through it because after time goes on you get your life back and you finally in control again. Check in any time I'm always hear to listen.

REPLY
drp985 | @drp985 | Feb 13, 2020

Has anyone got a contact for a body at mayo. I
One of the few on the planet that has full body.
Tried talking to Mayo but unless your a patient. It screw you.
Just want to find out if they can handle a full body RSD.

REPLY
Please sign in or register to post a reply.