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)


advertisement
Reply
 
Thread Tools Display Modes
Old 06-26-2019, 10:35 PM #1
7thDay 7thDay is offline
Newly Joined
 
Join Date: Jun 2019
Location: Long Island
Posts: 2
3 yr Member
7thDay 7thDay is offline
Newly Joined
 
Join Date: Jun 2019
Location: Long Island
Posts: 2
3 yr Member
Default CRPS Surgery

Has anyone had the spinal cord stimulator to replace a percentage of pain for crps ? Did it Work right away ? Recovery Period horrible or tolerable ? Would you recommend ?!? . Thanks for the feedback !
7thDay is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Karilee (02-13-2020)

advertisement
Old 06-27-2019, 06:58 AM #2
annabanana123 annabanana123 is offline
Junior Member
 
Join Date: Aug 2018
Posts: 95
5 yr Member
annabanana123 annabanana123 is offline
Junior Member
 
Join Date: Aug 2018
Posts: 95
5 yr Member
Default

I haven't because I'm leery about it. I have had a complication from literally every surgery I've had, and I've had probably around 10. If it's the last resort and meds stop working I will do the trial and decide.

That said many people do really well with it. Have you done the trial to see if it helps you? They have some now that you can still get a MRI with so I would definitely ask about that. I believe it's the new medtronic one that allows it. They say 82% of patients who get a SCS will need a MRI w/in 5 years. As you can see I've done my research so I'm prepared when or if the time comes.

Good luck with your decision and I hope whatever you decide works well for you!! Please keep us posted!!
annabanana123 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
birchlake (07-03-2019)
Old 06-27-2019, 02:34 PM #3
7thDay 7thDay is offline
Newly Joined
 
Join Date: Jun 2019
Location: Long Island
Posts: 2
3 yr Member
7thDay 7thDay is offline
Newly Joined
 
Join Date: Jun 2019
Location: Long Island
Posts: 2
3 yr Member
Default

My legs were crushed for 45 mins and it's spreading now throughout and now to my stomach . Want to know the outcome of this procedure after someone who has been in a accident like mine . How was there turnout? There are so many different cases and causes of crps
7thDay is offline   Reply With QuoteReply With Quote
Old 07-03-2019, 01:57 PM #4
msorenson2219 msorenson2219 is offline
Newly Joined
 
Join Date: Jul 2019
Posts: 1
3 yr Member
msorenson2219 msorenson2219 is offline
Newly Joined
 
Join Date: Jul 2019
Posts: 1
3 yr Member
Default

I just finished the "trial" SCS surgery. They require it in order for insurance to pay for the full surgery. The only difference is the battery was kept taped to my back instead of inside my body.

I would say it got rid of 60% (on average) of my pain, which was much needed relief! Sometimes it felt like 20%, but other times it was more like 90%. It was a bit tricky getting the nodes to the correct level at first, but when they adjusted them, it felt great! The relief was immediate. When they pulled the trial nodes out, the burning started up instantly.

I know recovery from the full surgery is a bit difficult. I expect back pain for a while. Also, not being able to bend or twist. You can't lift anything over 5 pounds. This recover period goes on for a few weeks while the nodes scar over.

Even with that, I am going for the full SCS surgery in a few weeks! I was able to have more of a normal life with it, and I think it will be worth the weeks of recovery from the surgery. I have CRPS in both legs/feet and in one arm
msorenson2219 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
birchlake (07-03-2019)
Old 07-04-2019, 07:59 AM #5
CRPSbe's Avatar
CRPSbe CRPSbe is offline
Member
 
Join Date: Mar 2009
Location: Belgium, Europe
Posts: 832
15 yr Member
CRPSbe CRPSbe is offline
Member
CRPSbe's Avatar
 
Join Date: Mar 2009
Location: Belgium, Europe
Posts: 832
15 yr Member
Default

Quote:
Originally Posted by msorenson2219 View Post
I just finished the "trial" SCS surgery. They require it in order for insurance to pay for the full surgery. The only difference is the battery was kept taped to my back instead of inside my body.

I would say it got rid of 60% (on average) of my pain, which was much needed relief! Sometimes it felt like 20%, but other times it was more like 90%. It was a bit tricky getting the nodes to the correct level at first, but when they adjusted them, it felt great! The relief was immediate. When they pulled the trial nodes out, the burning started up instantly.

I know recovery from the full surgery is a bit difficult. I expect back pain for a while. Also, not being able to bend or twist. You can't lift anything over 5 pounds. This recover period goes on for a few weeks while the nodes scar over.

Even with that, I am going for the full SCS surgery in a few weeks! I was able to have more of a normal life with it, and I think it will be worth the weeks of recovery from the surgery. I have CRPS in both legs/feet and in one arm
Mine is in both legs (disability) and 2 arms (still being treated with calcitonin, Belgium's main form of treatment).

I hope your surgery goes well.

Keep us posted.

And welcome to the boards, BTW!
__________________
All the best, Marleen
=====================
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
CRPSbe is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
full_moons_of_hope (07-20-2019)
Old 07-29-2019, 03:50 AM #6
Cpugh67126 Cpugh67126 is offline
Newly Joined
 
Join Date: Jul 2019
Posts: 4
3 yr Member
Cpugh67126 Cpugh67126 is offline
Newly Joined
 
Join Date: Jul 2019
Posts: 4
3 yr Member
Heart SCStimulators

Quote:
Originally Posted by 7thDay View Post
Has anyone had the spinal cord stimulator to replace a percentage of pain for crps ? Did it Work right away ? Recovery Period horrible or tolerable ? Would you recommend ?!? . Thanks for the feedback !
Never. I have had this disease for almost 24 years. I ran a support group for years by email. From all I have seen through the years I’d never get one nor recrecomend one. Several people in my group had them put in and all had problems with leads coming disconnected, infections also many had worse problems with their RSD. Anytime you get something implanted into your body it is very foreign and not natural. Remember many doctors get nice bonuses, trips, etc for every spinal cord stimulator one of their patients may get. I have seen horrible infections caused by the stimulators. Please beware and informed. Always ask and know what all risks could be please before getting one. They do not make the pain go away and can make you much worse. Wishing you the best, Sur
Cpugh67126 is offline   Reply With QuoteReply With Quote
Old 07-30-2019, 03:58 AM #7
CRPSbe's Avatar
CRPSbe CRPSbe is offline
Member
 
Join Date: Mar 2009
Location: Belgium, Europe
Posts: 832
15 yr Member
CRPSbe CRPSbe is offline
Member
CRPSbe's Avatar
 
Join Date: Mar 2009
Location: Belgium, Europe
Posts: 832
15 yr Member
Default

Quote:
Originally Posted by Cpugh67126 View Post
Never. I have had this disease for almost 24 years. I ran a support group for years by email. From all I have seen through the years I’d never get one nor recrecomend one. Several people in my group had them put in and all had problems with leads coming disconnected, infections also many had worse problems with their RSD. Anytime you get something implanted into your body it is very foreign and not natural. Remember many doctors get nice bonuses, trips, etc for every spinal cord stimulator one of their patients may get. I have seen horrible infections caused by the stimulators. Please beware and informed. Always ask and know what all risks could be please before getting one. They do not make the pain go away and can make you much worse. Wishing you the best, Sur
I also had so many people tell me these devices were "fine" IF they worked, the least amount you bend wrong or fall, leads can become disconnected or shift making the contact less than ideal.

No; not for me.

Also my RSD was too far advanced for this to still be recommended to me as a valid "treatment" option (even though it only deals with pain).
__________________
All the best, Marleen
=====================
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
CRPSbe is offline   Reply With QuoteReply With Quote
Reply

Tags
crps, horrible, period, recovery, tolerable

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
CRPS type 2 and surgery swimtime Reflex Sympathetic Dystrophy (RSD and CRPS) 16 11-06-2015 02:04 PM
CRPS & Surgery tdggal1980 Reflex Sympathetic Dystrophy (RSD and CRPS) 7 01-04-2015 12:23 PM
CRPS and oral surgery mtgoats Reflex Sympathetic Dystrophy (RSD and CRPS) 2 12-15-2014 07:59 AM
Crps and dreadig surgery KWolter Reflex Sympathetic Dystrophy (RSD and CRPS) 4 10-12-2013 11:01 PM
RSD/CRPS and surgery islandgrl Reflex Sympathetic Dystrophy (RSD and CRPS) 35 07-11-2009 12:54 AM


All times are GMT -5. The time now is 03:48 AM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.