I've had a back surgery that failed. That surgery was to fuse my lumbar, L2 - S1. I did not have that surgery until 5 yrs after my injury, my decision. After surgery, I had complications, massive blood clots throughout lower half of body. Almost died and in hospital & rehab for 30 days. I now have pain in my back, numbness & pain in left quad muscle, throbbing pain behind left knee area, and numbness plus pain in bottom of left foot. Some days are okay, some aren't. Pain mostly between 4 & 8. Use timed release morphine sulfate and oxycondone for breakthrough and 7.5mg Cumadin daily for the clots.

Just saw the psychologist this week. She okay'd me for the SCS implant. I'm on WC as well. My "psychiatrist" thinks I'm not. I want to dig this brace out of my back as it is now.

I'm scheduled to talk with the PM next month about SCS trial. Don't mind the trial so much, but I do not want more pain or another surgery or renewing the desire to physically remove the SCS.

I've adjusted to my pain and can function okay, but not work. My working days appear to be over. I have a cane I use to help with the bad leg and foot drop issue. I have requested a wheelchair, sport type, to move around shopping malls and outdoor events as I miss doing those.

From the overall responses I garner that most aren't having great success with their SCS units and that the risk of something occurring during the procedure is pretty high.

What is a person to do?

Be sure to check out the SCS link. There are some really knowlegable (sp) people on that forum that can give you some good advice. I am about 6 weeks into my implant and am having a pretty good result.

Hello Eileen,
I have 3 great CRPS buddies who have SCS's , each of them would not be without them. I had a trial of one and it was awful.
I would certainly consider a trial as I believe that " nothing ventured, nothing gained"
My trial had no long term adverse side effects but I am glad I gave t a go.
Good luck with whatever your decision may be

I have had mine for almost 4 years, now. A few thoughts from my experience.

1. Research you doctor's experience. Sometimes we hesitate to do that, since there seems are few doctors who even know anything about RSD. But, after I had mine for about 1-1/2 years, a different neurosurgeon said: "Who did this? I would have done it all differently." A different doc might have prevented some of my other problems.

2. The anchors for the lead are not deep enough, so they are constantly poking my skin from the inside. At times, I can't sit back without pillows propping that spot away from the chair back.

3. Question the location of the battery/generator. Mine was put in the hip-buttock area. I don't have as much "padding" there as some folk, and it feels like I am sitting on a fat wallet. (I should be so lucky! ha-ha) An alternate location is in the abdomen, but it is harder to run the wires and you need to avoid the belt area and the crease location when you sit down.

4. It will target a specific area. IF the RSD spreads, the SCS will do nothing for the new area. Unfortunately, that's what happened to me. The original spot is in partial remission, and another area is now going wild. So, the SCS is often turned off.

5. If you fly, you will need special screening from TSA security. Most of them have no idea what a SCS is. So, tell them "it is like a pacemaker, but for the central nervous system." They seem to get that.

Good Luck,

Mike

September 15 2008, while doing an exercise,after having the stim for only 5 months, I was thrown to the floor and was in electric shock for about 20 minutes. When I went to the hospital, it was also found that the stimulator had also caused a heart attack. I could not move below my waist for about 6 days. A bioengineer, flew in from San Diego, where in front of 8 witnesses, he used his remote, and found out that the stim was working on its own. He called it dysfunctional. To stop the stim, he had to use magnets to shut the whole system down. I continue to have medical probs, and nerve damage. Lawyers don't want it, because you can't sue a medical manufacturer. My day to get a lawyer is coming to an end.

ONE help : I have been in touch with Jon Bristow on KGO radio. He is very interested in getting to the truth. He needs facts, bullets. He is there for us. To put in your input and hopefully stop the docs from putting it in without more information,email
**

Please help to get it out there. To reach me please feel free to contact me at **

Thanks.

Boy I am glad To see some real post about how these SCS really work for people with nerve damage in the upper part of our body's arms, hands, wrist ect.

In the past 2 days I have read on this and another forum a lot about SCS nightmares. It seams that these work well on folks with lower back, hips,and leg pain. When it comes to arms, hands, wrist, shoulders with nerve pain is when I have read most not all but upwards of 95% had theirs removed.

My PM Dr has been trying to had sell me on having one of these implanted even before he ever looked at me. I had a Dr.visit last Tuesday and he again tried again to hard sell me on this after seeing him for 6 months. I told him no so he wants to send me to the Mayo for a 2nd opinion. My nerve pain just keeps getting worse and spreading up my arm into my back. My pain on my meds stays around 7+ to 9+ by the end of the day.

My PM Dr. has told me that I have the worst case of crpsII in a whole arm, hand, wrist, shoulder area that he has ever seen. As I have told him I do not have a very good feeling about someone messing around my spine in the nerve area since this all comes from a Dr. cutting my nerve by mistake in the first place.I ask my Dr. some questions about the SCS and I saw that he was getting p.o. with me. I have a voice in the back of my head that keeps telling me to not do this. I have to go with my voice it has never failed me yet.

I feel very bad for all these folks that have had this done and are now in more pain then before. I hope over time that there pain from these SCS will go away. It is sad to try to re-leave the main pain only to end up with more unexpected unnecessary pain.

This is my 2 cents on this subject.

This is the main reason my wife will not consider a SCS because she has upper limb RSD that has spread to her lower limbs. I too have read several unpleasant issues with scs and upper limb RSD.

I wish I could share more happier news, Iam all about happy, ya know.. BUT SCS it is a big negative for me..First you get excited for pain coping tool/intervention then once you have surgery, recover only to find..mine did spread ..just as much RSD pain as before and now painful back where I am deeply wired.. leads go the length of of my body internally to my shoulder blades inside my spinal column with my box living in my hip fleshy spot..

Sorry, I would send happy vibes if I had em..

Hugz, Kathy

RSD is a strange condition in that some procedures work for some not others. Catch 22 also fits this disease in so many ways. My wife made up her mind years ago (after doing extensive reading on RSD) to avoid evasive procedures. She did except physical therapy and ketamine infusions. She avoided surgeries, blocks etc.. Her thinking is the disease will spread most likely so let it take its course without speeding the process up with temporary fixes. There is a logic in this thinking, but I'm sure for others it's not. Many doctors did not like my wife's thinking on this and disregarded her as having the pain in her mind instead, even though she showed most physical symptoms of RSD and a severely crippled right arm and hand. By not allowing doctors in the early stage of her RSD to poke and prod, cut and stick etc. my dear wife was severely neglected by doctors. However, over time the disease has spread but I think she may have been worse off if evasive treatments took place.