Originally Posted by Happygeek
I just found NeuroTalk recently and have found it very helpful. I was diagnosed with RSD/CRPS about 3 years ago. My main area of pain is my left neck, arm and hand but to be honest, I hurt everywhere. I had 27 stellate ganglion blocks before having the Medtronic SCS implanted last June. It worked great at first, giving me about a 30% pain reduction but now it's probably about 5-10%. I don't know what to do about the SCS...leave it in for the battery life (5 yrs) or have it taken out sooner. Since I am not having any problems with it, I might just leave it in....the airport pat downs have been amusing, lol!
This condition sucks....no one understands what it is like to be in pain ALL. THE. TIME. I have tried cymbalta, lyrica, neurontin, acupuncture, talk therapy, pain meds, experimental blocks (Botox)
I try to keep busy but mostly I don't leave the house or only plan one thing per day so that I don't have to keep canceling on people....
I just had a new CT scan of my neck to see if there have been any changes in there....is there any treatments that I am missing? Any help or suggestions would be appreciated....
JoMar's suggestion about ruling out other conditions is a good one. What types of doctors do you have on your treatment team? It might be useful to obtain a referral to Dr.Robert Schwartzman in philadelphia, arguably the top CRPS expert in the country. The wait is 2.5 years but I found the visit to be the most informative of any physician I have consulted. Additionally he sees a high volume of people with failed spinal cord stimulators and could provide you with guidance regarding long term options dealing with your stim.
Getting only 30% relief, although helpful, is not surprising. Typically the devices will not be implanted unless a trial yields at least 50% relief. The trouble is there is really no relationship between 50% relief at trial and long term success with a Spinal Cord Stimulators and Complex Regional Pain Syndrome. Although the manufacturers of spinal cord stimulators gained FDA approval for the devices for disorders like failed back syndrome, they were not recommended for CRPS and the long term failure rate for CRPS is quite high. Failure rate within the first two years is common.
As regards removal you must consider the possibility of spreading your CRPS, either to the surgical site (if that has already not occurred, which again is common) or to other limbs or internal organs.
Have you tried physical therapy to address the atrophy in your hand? Many CRPS patients have found Ketamine infusions to be very helpful. You also might want to consider tDCS, which has a high success rate with treating many forms of chronic pain, including CRPS. It is non-invasive and has virtually no side effects.
Hang in there!