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 06-13-2008, 06:56 AM #1
daniella daniella is offline
Magnate
 
Join Date: May 2007
Posts: 2,998
10 yr Member
daniella daniella is offline
Magnate
 
Join Date: May 2007
Posts: 2,998
My Mood: Scs experiences
10 yr Member
Default Scs experiences

I am thinking of getting a scs next month. It of course will be the trial first. This procedure I am going to go to Cleveland Clinic for and the doctor does many of these a year. Still my luck with treatment and doctors like many has not been so good usually resulting in higher pain so I am very nervous. Does anyone have any opinions or experiences they could share?My major pain is inner ankle/foot/calf of left leg. Thank you.
daniella is offline   Reply With QuoteReply With Quote

advertisement
Old 06-14-2008, 12:27 AM #2
Bronco4586 Bronco4586 is offline
Junior Member
 
Join Date: Apr 2007
Location: Garland, TX
Posts: 70
10 yr Member
Bronco4586 Bronco4586 is offline
Junior Member
 
Join Date: Apr 2007
Location: Garland, TX
Posts: 70
My Mood: Scs experiences
10 yr Member
Thumbs up scs

Quote:
Originally Posted by daniella View Post
I am thinking of getting a scs next month. It of course will be the trial first. This procedure I am going to go to Cleveland Clinic for and the doctor does many of these a year. Still my luck with treatment and doctors like many has not been so good usually resulting in higher pain so I am very nervous. Does anyone have any opinions or experiences they could share?My major pain is inner ankle/foot/calf of left leg. Thank you.
Daniella,


I had the SCS installed on 7-5-07. It worked great! I have regained all the use of my leg since and stopped using all meds up until last sunday. Last sunday one of the wires broke on the leads in my back which caused ne severe pain. They did go back in and fix it and all is good, another thing that I have noticed is that the battery pack gets hot in my left hip and it is bothersom but not painful. It is a lot better to deal with rather than the rsd pain, I recommend going with it if it works for you. I will tell you that the surgery is quite painful. But the relief I got was worth it. However if another lead breaks I will have it removed as I can't keep dealing with the surgery. Please feel free to ask any questions if you have them.
__________________
Dana
Bronco4586 is offline   Reply With QuoteReply With Quote
Old 06-14-2008, 10:50 AM #3
daniella daniella is offline
Magnate
 
Join Date: May 2007
Posts: 2,998
10 yr Member
daniella daniella is offline
Magnate
 
Join Date: May 2007
Posts: 2,998
My Mood: Scs experiences
10 yr Member
Default

Thank you so much. You had the trial first? You are awake I heard for the surgery? How long after the trial do they do the implant? These are all ?'s I am going to ask at my apt. The doc I had seen at Ucla who wanted to do it was so rushed so I hope this one at Cleveland will answer my ?'s. Are you limited after the surgery or do they like you to get moving? I have made progress on my own but still my pain is high so I feel conflicted. I am glad you have seen benefits. I am sorry there are issues though. This seems like a common problem with them. Another girl I know had it and has had similar issues. Good luck and thank you
daniella is offline   Reply With QuoteReply With Quote
Old 06-14-2008, 11:34 AM #4
Curious Curious is offline
Yappiest Elder Member
 
Join Date: Aug 2006
Location: Texas
Posts: 13,418
10 yr Member
Curious Curious is offline
Yappiest Elder Member
 
Join Date: Aug 2006
Location: Texas
Posts: 13,418
10 yr Member
Default

daniella, do a search here on nt for scs.

there have been many members have them.
__________________
Curious is offline   Reply With QuoteReply With Quote
Old 06-14-2008, 12:24 PM #5
lostmary's Avatar
lostmary lostmary is offline
Member
 
Join Date: Apr 2007
Location: fredericksburg, Virginia
Posts: 459
10 yr Member
lostmary lostmary is offline
Member
lostmary's Avatar
 
Join Date: Apr 2007
Location: fredericksburg, Virginia
Posts: 459
My Mood: Scs experiences
10 yr Member
Default

I've had the scs since Nov. of last year. I love mine. I did have the trial first. My dr. doesn't believe in pain, so I don't even remember him waking me up to see where the leads were. He said he did, but i don't remember. I had it in for 5 days. then it came out. I didn't want it out. Yes your back hurts a bit, but after abt 3 days I was up and putting shoes and socks on and went to a home and garden show. I had been in bed or a wheelchair for over 4 years. I had to wait a month for the perm. Again, don't remember it, but yes, you do have to take it SUPER EASY afterwards. there is no bending, lifting,twising,or anything like that for about 3 months. At first you really don't want to move because your back and butt (for the battery) are pretty sore. My incisions were only a couple of inches long in the back and the same in the butt. The stitches came out after 3 days. No problem healing at all. The hardest part is when you start to feel better, for me it was a couple of weeks, and you still can't do anything. that is when a lot of people have problems. You have to wait for the leads to scar into the back before you can move around like normal. I am now working with my horses again, I'm cleaning the stall, and mowing/ dragging the pastures. Of course, it takes me longer to do all this, but at least i can now do it.

Any other questions, just let me know.

Hugs
Mary
__________________
There is no future, there is no past, we must make each moment last
lostmary is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
ali12 (06-14-2008)
Old 06-15-2008, 10:56 AM #6
neicy neicy is offline
New Member
 
Join Date: Jun 2008
Posts: 2
10 yr Member
neicy neicy is offline
New Member
 
Join Date: Jun 2008
Posts: 2
10 yr Member
Red face

Quote:
Originally Posted by lostmary View Post
I've had the scs since Nov. of last year. I love mine. I did have the trial first. My dr. doesn't believe in pain, so I don't even remember him waking me up to see where the leads were. He said he did, but i don't remember. I had it in for 5 days. then it came out. I didn't want it out. Yes your back hurts a bit, but after abt 3 days I was up and putting shoes and socks on and went to a home and garden show. I had been in bed or a wheelchair for over 4 years. I had to wait a month for the perm. Again, don't remember it, but yes, you do have to take it SUPER EASY afterwards. there is no bending, lifting,twising,or anything like that for about 3 months. At first you really don't want to move because your back and butt (for the battery) are pretty sore. My incisions were only a couple of inches long in the back and the same in the butt. The stitches came out after 3 days. No problem healing at all. The hardest part is when you start to feel better, for me it was a couple of weeks, and you still can't do anything. that is when a lot of people have problems. You have to wait for the leads to scar into the back before you can move around like normal. I am now working with my horses again, I'm cleaning the stall, and mowing/ dragging the pastures. Of course, it takes me longer to do all this, but at least i can now do it.

Any other questions, just let me know.

Hugs
Mary
I am new to the RSD disease and have only been diagnosed for 3 1/2 months now. I have seen 5 dr.s, and have been doing physical therapy for 6 weeks.
Last Thursday I was told about the Spinal Cord Stimulator, but don't really know if i want to do it. I would appreciate any advice on the good and the bad of it. I have also ready a prior story about a man who had one and it caused the RSD to spread, is that true. My doctor got angry when I mentioned that story and asked me to email her a link so that she can RESEARCH it and see if it's real. Like I'm really going to do that .
Anyway, any advise would be wonderful.

Thanks,
Neicy
neicy is offline   Reply With QuoteReply With Quote
Old 06-15-2008, 11:31 AM #7
daniella daniella is offline
Magnate
 
Join Date: May 2007
Posts: 2,998
10 yr Member
daniella daniella is offline
Magnate
 
Join Date: May 2007
Posts: 2,998
My Mood: Scs experiences
10 yr Member
Default

Thank you so much. I am glad you found it helpful and are getting your life back. It is such a hard choice. I will also do a search like you said. I am suppose to meet this girl who had the surgery with my doctor but she has been having issues with her scs so that is scaring me and I woul also like to meet someone in person with it. I feel it may make me more comfortable.I will keep you updated. Thanks
daniella is offline   Reply With QuoteReply With Quote
Reply

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
Looking for LDN users experiences MSacorn Multiple Sclerosis 17 10-02-2008 10:30 AM
Lamotrigine: anyone have any experiences? babyjayne Epilepsy 16 06-05-2008 05:51 PM
PT - Your experiences? Kyzyl363 Reflex Sympathetic Dystrophy (RSD and CRPS) 46 11-30-2007 08:47 PM
cervical adr experiences rob_zzz Spinal Disorders & Back Pain 0 03-14-2007 01:37 PM
In need of your experiences... Idealist Chronic Pain 8 10-05-2006 02:31 AM


All times are GMT -5. The time now is 10:03 PM.

Powered by vBulletin • Copyright ©2000 - 2020, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2020 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.