Bumping Post for saraleeCRPS and albrown3
Originally Posted by CRPSjames
I am so sorry you are traveling the CRPS road. Since you don’t like things sugar coated and since one of the most risk filled procedure you can have when you have a CRPS diagnosis is a spinal cord stimulator I am sharing my truthful experience as well as links to other truthful experiences, of many like you who have had the devices implanted and been made far worse. Here is my first post on the forum from February of this year to provide you with my experience.
"I have recently joined the forum and hope to help others through my successes and failures with treatment for CRPS. I was diagnosed with CRPS in 2006 after run of the mill knee surgery, which began my CRPS trouble. After trying the usual treatments (blocks) and the more unusual treatments (HBOT) and the typical array of meds, my condition only worsened. My pain management doctor suggested a Boston Scientific Spinal Cord Stimulator. I was nervous but desperate for pain relief. I spent hours on the internet reading first hand descriptions of success stories. My trial was successful and although recovery from the actual implantation was grueling I was excited to get my life back. I had a good experience with the Boston Scientific rep, starting with my request to do my own programming, which hastened tweaking my stimulation. (I now know that self-programming has no relation to positive outcomes for SCS and CRPS patients. A patient receiving a spinal cord stimulator behind CRPS and self-programming is like a passenger being permitted to steer the Titanic behind the encounter with the iceberg.)
I was so sold on my experience that I became an outspoken advocate for SCS for other CRPS patients. Unfortunately, after about 20 months the stimulator just stopped working. A revision surgery caused a spread to my other leg and another revision resulted in a spread to my wrist shortly thereafter. When the doctor suggested implantation of another stimulator to address the wrist pain and try to get me out of the wheelchair that the failed SCS left me in I decided I’d had enough and it was time to do some real research.
I had the good fortune of being evaluated by a knowledgeable neurologist who I wish I had found prior to the SCS implantation. He explained what my own research had already uncovered.
Spinal Cord Stimulators (even the competitors of Boston Scientific like St. Jude) have long-term success with types of pain like Failed Back Syndrome. Relief for CRPS is at best limited to months or a few years. SCS for CRPS eventually increases and aggravates vasoconstriction and inflammation and further disrupts brain plasticity (the culprits of CRPS.) The eventual result of my spinal cord stimulator was rashes, sores, swelling and my alodynia was much worse than prior to implantation. Additionally, each revision surgery began a new area of CRPS pain as well as initiated the spread to my other leg and wrist. The neurologist explained this action to me in this way: The stimulator stimulated the pain fibers in my spinal canal, which spread the CRPS to other areas, like a freeway efficiently facilitates transporting vehicles to distant locations.
I told the neurologist that my pain management doctor said the spread had nothing to do with the SCS and that “CRPS spreads” and to prove his point he suggested I “ask the rep or call the company.” My neurologist found this laughable and stated, “Conversations like this demonstrate ignorance, greed or both.” Regarding the rep, I couldn’t have asked him questions if I wanted to because as soon as he found out I refused additional business for him he ignored me-yes totally acted like I was a stranger in the waiting room. When I approached him and asked to speak with him he claimed he was “busy” and would call me. Never happened.
My biggest regret is not that I failed to do my own research prior to implantation, or that I did not listen to my gut with the revisions, or even that I ignored the many warnings of other CRPS patients who had similar failures, or that I didn’t notice that the “success stories” were from people who had their stimulators for relatively short periods of time-months to a few years. My biggest regret is that I assertively encouraged other similarly desperate and naïve people with CRPS to have spinal cord stimulators implanted. Three of these people that I know of have had failures after initial good results, which, like me left them in much worse condition.
Since I can’t undo the damage I have caused others the only thing I can do is to share my experience and encourage others with CRPS to “just say no” to spinal cord stimulators, no matter how desperate you are for pain relief.
I was working when I was implanted. Now I am working my way out of a wheel chair and fighting spread, dystonia, skin infections, rashes, and alodynia that is far worse than prior to implantation.
My condition is now rapidly improving through the use of tDCS, which I learned about from this forum. How I wish I had tried this treatment prior to being debilitated by the spinal cord stimulator.
If you are considering a SCS the last place you should go to ask about risks is your pain management doctor (who stands to loose upwards of $40,000 if you decline, even more with revision surgeries), the company rep and testimonials of patients less than three years out from implantation.
I wonder where I would be today if the fork in the path had led me to tDCS rather than to a spinal cord stimulator?
It is better if I don’t really think about that too much but I hope others who still have a chance to protect themselves will."
Kelly, for additional information please carefully review the following links. You will find an excellent checklist to take to the physician who will be implanting the device. How I wish I had this tool and used it prior to being implanted with the device. There is also a list of CRPS patients who have had spinal cord stimulator failures, revision surgeries, spreads of CRPS and/ or explants of the device. After reviewing this information I suggest reading the tDCS thread on the RSD/CRPS forum. Think about why your physician has not suggested tDCS prior to a considering a spinal cord stimulator.
Please put the brakes on this procedure until you have done your homework. My only homework consisted of listening to the doctor who stood to make a hearty profit on the procedure, the company rep (need I say more) and the comments of a few on line people with CRPS who had the stimulators for relatively short periods of time. (less than three years) If I had looked more carefully at that group I would have seen that it was more of a “leap and pray” approach than anything rooted in reality. Prayer is great but if that is all you have to throw at the procedure you are asking for an experience like mine. Please feel free to send me a pm if I can provide you with more support.
P.S. Please see Hooshmand's website for information on CRPS and Pregnancy. I am very concerned about any physician who would suggest a Spinal Cord Stimulator as a path toward pregnancy.
Welcome saraleeCRPS and albrown3. Hope this information is helpful.