I remember reading this as well but.. I have also read that RSD/CRPS will spread regardless.

When making my decision to go forward with the SCS, the things I considered were: (I know we are all different and I'm not saying this thought process is for everyone but, I wanted to share it anyways.)

1. Without something like the SCS that will allow me to be mobile the disease will cause further problems more rapidly due to disuse.

2. Would spread to the incision sites be worse than not walking?

3. If there was spread to the incision sites would those areas be more effectively treated through topical analgesics like lidoderm patches, voltaren?

4. I could live in fear of spread through a simple injury of daily life and through the normal course of the disease process. If the SCS works for my worst pain in my legs (with or without spread) then I may well benefit and live more actively in all aspects of life for a number of years.. or more.

In the end the benefits of the SCS far outweighed the risk. I went forward with the trial and it was a huge improvement.. no not 100% but at least 50 and often up to 70% relief all depending on what I am doing. I am now on day 10 post op from the permanent and unlike the initial surgery that caused CRPS II literally as soon as I woke up on the recovery table, so far I have not had any signs of spread. Since day 3 of the permanent I have been walking up to a mile 3xper day and also riding my recumbent bike to help control pain without the use of pain meds. Prior to the SCS I could barely walk 15 steps and pain was so high tears welled up several times a day. I have turned it off a couple of times only to have the pain come back in an instant.. it blows my mind how much it masks, I am so thankful for this technology. I know it may not work forever... but I will take FULL advantage of each and every day it may offer me now matter how long. I will not let the fear of spread prevent me from living because as I have been told and have read it WILL spread no matter what at some point.

I might also add for those considering this technology - The implant (battery and leads) are not causing me any issues that I can't deal with. My waistband does still bother the battery site but, I am only 10 days out so maybe that will settle, if not I will adjust or go shopping for things that fit differently. I can sleep on either side as long as I gently lay on the op side. I lean back into a chair but, sometimes add a little cushion for comfort. For me - the adjustments to living with the SCS are small in comparison to the adjustments I made trying to deal with the pain and limitations of CRPS!!! Without a doubt I would do it all over again.

God bless,
Tessa

Hi, if anyone is considering a block, I would love you to check in with the foremost expert in CRPS in the U.S. (from what I can tell) who is Dr. Pradeep Chopra in Rhode Island. Have a consult with him first and see if he thinks a block is a good idea because I have heard that they can cause CRPS to spread. But he will have other ideas too which is what we all need, an overall plan and hope. Physical therapy and the right kinds of massage therapy are what we found extremely helpful. No medications ever helped, but we are going to try low dose naltrexone which has good research evidence on it.

I had several blocks (right arm) when I was first diagnosed with RSD. The first three didn't do much for me either. The fourth, on the other hand, helped tremendously. It was a different kind of block that totally numbed my arm because I was having a MUA of my right shoulder. I went to therapy right after and my arm began to improve. I think that numbing the limb completely may have reset something. Just a guess, not sure. Good luck to you . Prayers and soft hugs.