dorcel column stimulator - Reflex Sympathetic Dystrophy Message Board

ColleenC · 08-05-2003, 08:25 AM

Hi Everybody,
I'm new at this site. Have had RSD for about 8 years now. Am in the 3rd stage. Have tried everything but the stimulator. So would love to hear from you no matter if it is good or bad. Hoping everybody has an almost pain free day!Also have been to most of the guru's so please feel free to ask. Will give you my opinion(FOR WHAT IT'S WORTH!!) or my experience.

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cattys · 08-05-2003, 09:05 AM

Welcome to our lil RSD family.

I have had the upper scs for my arm and it helped for a couple months and now I think my arm is worse. It is good for my legs it still helps there pretty well. Every individual reacts differently to the scs. Some people it had totally changed there life for the better and continues to do so. Then there are people who it stops working for and just creates a new area for RSD to invade. The good thing is you can do the trial to see if it is right for you.

what kind of symtoms do you have with stage 3. What area of your body is the RSD in?

I hope you stay around this forum. There is always someone here to try and answer your questions. Jump in anytime.

Take care
Cattys

Soxy · 08-05-2003, 09:37 AM

Hi Colleen! Welcome!

Sorry to hear you have had this monster for so long. I was diagnosed last year with RSD in my left foot. I now have it in my right foot. The left foot appears to be in remission (shhh!). I've mostly done the blocks as far as treatment and some PT which did nothing. I see the pain doc tomorrow. Will probably continue with blocks for the right foot then who knows??? How is your pain level? Mine has been pretty bad. The weather has been hot and humid and makes my foot very unhappy. I think you will find this board a very comfortable place to hang out. Everyone here is so caring and supportive. It's been a godsend to me. I swear I've learned more here than from my doctors!! Take care and I hope to "talk" with you soon.
Soxy

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There is always hope....

RSD_Angel · 08-05-2003, 09:52 AM

Hi Coleen,

I have had RSD in my Right foot for just a year this month.. what an anniversary rihgt? I also have RSD stage 3 and have had many treatments to get this in remission. Mine has moved fast only because of the docs that i had before didnt knw crap about it and just let me go and i couldnt take it any longer and went to a university hosp and found a WONDERFULL pain doc. I still might loose my foot bc of the severe osteoporosis, and muscle death and the severe foot deformity i have due tothe RSD.

Right now ihave a spinal cord stimulator that was implanted in March and have had it revised once to put more leads nad electrodes in it. My stim has stoped working on my foot. I mean, that i get the stim every where else but from my knee down and thats where the severity of the RSD is. So i find out tomarrow what is in store next., he mentioned a pain pump bc i reacted well to the continuous epidural ihad in FEb, but??/

I would have done the spinal cord stim again in a heart beat. It worked soo well for the first 3 mos and then it started to not work. My doc said my body got use to the stimulation and the pain found its way around it... soo.. the surgery wasnt that bad at all.. my gall bladder surgery was worse!!

If you have any questions for me please let me know, and welcome to the board. This board has also been a god sent to me and have learned soo much from the people here!! HOpe you are having a pain free day!!

Bryn

Iam2boysMom · 08-05-2003, 10:42 AM

Hi RSD_Angel,

I too am looking for info on SCS, My PM DR suggested it. I too have RSD in both feet. I have responded well to Sympathic Nerve Blocks.

I went for a 2nd opinion of a Pain Dr and thought he would recommend the Long Term Drip - How long did you have to have yours in. the Pain Dr I went to said they don't do those any more (apparently they left it in for a month) because of infection rate was increasing and their patients were not responding as well. So they recommend SCS.

Glad to hear it worked but sorry to hear you might need more surgery to refix it. That is what I am afraid of.

A couple of questions: did you do a trail and if you did was the leads used for the trail your permanent leads or did they put others in for the permanent one.

Thanks and hoping you pain free days.

oh yes, welcome, I also am a newbie. Only found this site last week after doing search for SCS.

Patty