Wow, it is crazy to read this. I'm also 24 and had an intrathecal pump implanted in June. - I did the stimulator trial but it worsened my pain. I'm not sure if you're familiar with the pump but it's basically the same thing but it delivers meds into your spinal fluid instead of the pulse the stimulator has. It's crazy to hear that you're experiencing back pain because a couple of weeks ago my incision site was sore and then a few days later it just exploded into pain and I can hardly stand to move. I went to the doctor and complained and they gave me an epidural which helped a little bit. If you find anything that helps please let me know because it looks like we're in the same boat!!

Hi Everyone, I'm new to this group. I was diagnosed with RSD about a year ago, but suffering for almost 3 years. I am suppose to go have the spinal cord stimulator trial done on November 29th. My question to any of you who have had this done....what kind of recovery did you have just for the trial. Then if you did go on with the implantation, the same question..what kind of recovery? Were there limitations on driving?, sitting, etc. I'm reading that pain meds are not eliminated with this procedure. Were you able to stop meds? I'm almost a single mom, my husband works in Baton Rouge and is home about 6 days out of the month. So this is very important for me to get information from those of you who have had this done. The only information I have received was from the sales rep of the company who makes the device. She says,"Oh, no downtime...you can drive the next day, just turn the device off." I can't imagine having an 4 to 6 inch incision in my back and going to work the next day! I'm calling bulls... on her. Thanks so much for any information any of you can give. My pain doctor referred the sales rep to me when I called to question her.

Welcome to our small but supportive group bostontenn!

I'm sorry I don't have the answer to your question though. Hopefully one of the others will.

I agree the sales rep was way to quick to say everything would be wonderful. I have had RSD since June of this year and it seems to be spreading even though my doctor has been treating it aggressively with lumber blocks every 2-3 weeks. I got it after having two hip surgeries and also breaking my big toe. My back seems to be giving me increasing lower back pain so I kind of wonder if the problem is the pump or the spread of RSD for these folks?

Bostontenn,
I had the stimulator trial and I absolutely was NOT able to drive! I couldn't lean back. I also had a lot of back pain with it (some do, some don't from what I was told). They also didn't tell me I wouldn't be able to bathe or wash my hair until I was at the doctor's the day of the procedure.

I didn't get the implant. the trial didn't help me that much, and so I didn't figure it was worth the risk of even more pain.

Also, be aware that many insurances do not pay for "durable medical equipment". I was surprised that the price of the trial was as much as the actual implant (minus the hospital). Ask your insurance company if they pay for "durable medical equipment".

Hope this info helps. Good luck to you!

Hi everyone...just wanted to say a few things about my trial spinal cord stimulator. I just had my leads removed yesterday. I was diagnosed with RSD April 2012. Broke my talus bone in my foot in Sept.2011 at work. Break was not seen in x rays, so I walked around on a sprain for a month and a half. MRI finally showed the break. Continued to have pain and kept telling my Ortho doc who seemed to be 2nd guessing me. He had me see a different doc in the same office who requested another MRI shortly after my RSD diagnoses. My peroneal tendon was torn lengthwise and was opened up and flat. Surgery done in May 2012 was awful. In total from the break and surgery, I was in 4 casts. RSD has now moved into my other leg, and possibly moving into my arms. During my SCS trial this past week, I had an episode where my left leg pulled inward from my knee down through the arch of my foot. I went into excruciating pain and thought I was going into shock. My foot looked completely deformed and my husband had to call an ambulance. It took a mega amount of drugs for my foot to finally relax. My doc and the St. Jude rep said the SCS had nothing to do with it. I was petrified to turn it back on. They wanted me to come in for reprogramming(for the 3rd time in a week). I called the rep and told him I was done with the whole thing. My doc's office called me and told me that I better come in and be reprogrammed, because if the SCS didn't work, there was nothing more that they could do for me. This caused a great deal of ADDED depression because I wasn't getting any relief from the SCS, and I absolutely hated the sensation. I was really optimistic about the SCS. I have been falling periodically for at least the last 8 months. My doc says it's because I'm having mini seizures in my spinal cord. Most days I wake up extremely weak, today being 1 of those days. I got off the couch to go do laundry, last my balance and fell against the wall face first. Ended up with a bloody nose. Wondering if its time for a wheelchair since I'm home alone all day. I walk as much as I can but end up in excruciating pain after a short time. I'm wondering if anyone out there has had weird side effects from the SCS. Good luck to you all and thanks!