Originally Posted by RSDJennetta
I haven't been on lately because of a lot of things going on in my life. I do read the threads often. I used to be the one with positive advice or comments and used to be really upbeat and positive about life. A short background - I have had RSD since 2000 and it developed after surgery. After countless doctors, I found some that believed me and was given trigger point injections, put on multiple medicines (none would give anything stronger than neurontin - possibly because I am bi-polar), and had a temporary scs that was very effective, thus, having a permanent one put in. Well, it worked for about a year. I have RSD in my back, right foot, and right arm. Everything was tolerable until this happened:
The back of my neck started swelling up and becoming very painful. I went to my regular doctor and he thought I had a cyst next to my scs leads and did not want to touch it. I went to the neurosurgery department that put the scs in and they said there was not a cyst but the leads were causing the pain (after 3 years of having the scs). I decided to have it removed even though the procedure of having it put in was horrific and I would never want to go through that again. They "reassured" me that it is not as bad as having it put in. Well, it was. I dare to say it was even worse. It has been 4 weeks and I am still in pain even though I am taking oxycodone 10mg every 4 hours with 2 extra strength tylenol. I was taking 20mg but it was making me loopy and I hate to feel that way. After 3-1/2 hours, the pain returns and I have to ride it out that last half hour (even on 20mg it did the same thing). I am depressed. I cannot drive, I have to wear a neck collar, I cannot do anything physical, and I do not want to leave the house. My friend, mom and son are helpful, but I do not like asking for help (I am getting better at it). I see the doctor in 2 weeks. I am nervous that the RSD is in my neck now because the pain has not really improved much since surgery.
Now what? I do not like not knowing what the future holds. I am not sure that the doctors will let me stay on pain medication. I do not know what they will suggest, if anything, to control the pain. I hate this! I struggle every day to try to be positive like I used to be but it becomes harder and harder.
Thanks for listening.
There is hope after a failed spinal cord stimulator with CRPS. It is very common for them to fail within the first 2-3 years. Mine lasted under two years, and caused severe spreading of CRPS to my incision sites, wrist and worsened the original CRPS. I opted to leave the stim in since I could not risk even more damage since the SCS landed me in a wheelchair. I am with you that the original surgery was horrific. I was told by the top CRPS Dr. in the country that removal would be much worse than implantation due to scar tissue.
Please get plenty of rest and do ask for help. When I became wheelchair bound asking for help of any kind was so difficult. I now realize I made things so much harder on my family by not seeking help. It is good that you have been provided with medication to get you through this.
Please consider tDCS. You can read through the tDCS thread to learn about it. Since January I have gone from a wheelchair, to a walker and I am now on a cane. The severe spread to my wrist is totally gone as is the atrophy in my legs. Since the Spinal Cord Stimulator caused such a severe worsening of my CRPS I was awarded SSDI on the first try. Now I am hoping to eventually be able to return to work. The added bonus is that tDCS, in addition to zapping the pain and numerous additional incapacitating symptoms, deals with the root cause of the problem, a reorganized brain, not just masking the problem as do meds and SCS.
Hope you find this useful information.