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Reflex Sympathetic Dystrophy (RSD) (CRPS) board


Well, I have had 3 SCS implants since 2002. My RSD started in 2000 in my left foot/leg & traveled to my right foot/leg and lower back. This all resulted from having Endoscopic surgery on both feet for Plantar Fasciitis. While the doctor was in there, he hit my nerves.

After going through drug therapy, physical therapy, & spinal injections, I finally wanted to try something that would help me get through the day because I was still working at the time. I had the firt SCS put in on 3/22/02 and it worked pretty good until one of the leads went bad so I had to have it replaced. This took place on 3/25/04, however a different surgeon replaced the SCS box and I had some complications from the surgery. My spine was swelled for a couple of weeks so I had to go through a few rounds of steriods to get it to go down. It was so very painful but the steriods did the job. Now I've got the weight to prove it....:)

A couple of months after this, my legs started giving out every so often either when I was walking or standing and my hands/arms were really swollen. My right hand/arm hurt the most. I had to have the SCS box removed so that they could do an MRI on me because they suspected that I had a Syrinx in my spinal cord. Long story short....I did have a Syrinx in my spinal cord but after seeing 3 Neurologist they all agreed that it was not the cause of my hand/arm & leg problems.

My pain care specilist then sent me to another surgeon to have my SCS box put back in (1/12/05) because my pain was getting out of control again. This surgeon was so fantastic, that I would go back to him any time. Even his staff was so good to me. Well, I went back to my pain care specialist and he told me that my RSD had become Systemic in which it had spread through-out my body. I started having episodes where the RSD would attack some of my organs, these are the worse. So, I had to have a Morphine Pump implanted in Oct 2005. It has helped some but I still take meds and still experience pain like everyone else. I had to retire back in Sept 2004 because I had a problem with walking, so now I use a scooter to get around my home and a wheelchair when I go out.

Sorry this is so long. I feel for you because I know what your going through. I don't think that the SCS box causes RSD to spread because I have had 3 of them now and the 1st & 3rd one has given me relief where I needed it most. Talk to your doctor and see what he/she says about it.
I will keep you in my prayers, Marie :angel:
[QUOTE=palarin;2932569]Well, I have had 3 SCS implants since 2002. My RSD started in 2000 in my left foot/leg & traveled to my right foot/leg and lower back. This all resulted from having Endoscopic surgery on both feet for Plantar Fasciitis. While the doctor was in there, he hit my nerves.

After going through drug therapy, physical therapy, & spinal injections, I finally wanted to try something that would help me get through the day because I was still working at the time. I had the firt SCS put in on 3/22/02 and it worked pretty good until one of the leads went bad so I had to have it replaced. This took place on 3/25/04, however a different surgeon replaced the SCS box and I had some complications from the surgery. My spine was swelled for a couple of weeks so I had to go through a few rounds of steriods to get it to go down. It was so very painful but the steriods did the job. Now I've got the weight to prove it....:)

A couple of months after this, my legs started giving out every so often either when I was walking or standing and my hands/arms were really swollen. My right hand/arm hurt the most. I had to have the SCS box removed so that they could do an MRI on me because they suspected that I had a Syrinx in my spinal cord. Long story short....I did have a Syrinx in my spinal cord but after seeing 3 Neurologist they all agreed that it was not the cause of my hand/arm & leg problems.

My pain care specilist then sent me to another surgeon to have my SCS box put back in (1/12/05) because my pain was getting out of control again. This surgeon was so fantastic, that I would go back to him any time. Even his staff was so good to me. Well, I went back to my pain care specialist and he told me that my RSD had become Systemic in which it had spread through-out my body. I started having episodes where the RSD would attack some of my organs, these are the worse. So, I had to have a Morphine Pump implanted in Oct 2005. It has helped some but I still take meds and still experience pain like everyone else. I had to retire back in Sept 2004 because I had a problem with walking, so now I use a scooter to get around my home and a wheelchair when I go out.

Sorry this is so long. I feel for you because I know what your going through. I don't think that the SCS box causes RSD to spread because I have had 3 of them now and the 1st & 3rd one has given me relief where I needed it most. Talk to your doctor and see what he/she says about it.
I will keep you in my prayers, Marie :angel:

Marie,
Thank you so much for replying. I wish I found this site 10 years ago. I am so sad for you. You know my best friend's mom from when I was 3 was in a wheelchair for some rare bone disease. I was closer to her than my own mom and I beleive that happened for a reason. I saw how people treated her, and I hated it. I knew she was no different than anyone else, but everyone treated her like they were sorry for her. She wasn't sorry for herself and she was the greatest person I have ever known. She taught me a lot about moving on and being strong. Today my husband is getting me a cane and I am so afraid to use it. I hate saying that to you or anyone because I bet you wish you could use a cane. What I mean is I feel like I am giving in to this disease. If I suffer and hurt my foot/leg/back by being stubborn it is just going to make matters worse. I am so sorry that it is in your organs. I hope they find something that helps you and everyone with this disease. I talked to my surgeon today and he is going to do some tests on me monday. Something about injecting dye into my spine. I wrote it down and am going to look into it before the procedure. Thank you for your kind words and you will be in my prayers. I wish for you a miracle- Nikki