Dear Mrs. Batman -

I do not like to the be bearer of bad news, but f you search the forum - by using the tab at the upper right of each NT page - you will find any number of horror stories under "spinal cord stimulator" or just try "stimulator," for that matter. (Unfortunately, the software can't handle searches of 3 character terms such as SCS.)

Bottom line: there is NO disagreement that. SCS (1) NEVER provides analgesic relief beyond 3 years, (2) does not prevent the further progress of the disease, and (3) is all too often associated with singificant side-effects, arising out of either the surgical implantation or just the burden of wearing the thing in one's back over time, often requiring further surgery just to remove it. Moreover, I'm willing to bet that not all of this has been disclosed to your husband.

From all I understand (although there may conceivably be exceptions) the pririmary reason they are implanted is because they are HIGHLY REMUNERATIVE to pain docs, who like most physicians are paid much higher, at an hourly rate, for doing procedures than office visits.

At only 1.5 years into this, better your husband should find a center that does 2-week outpatient ketamine infusions, which can lead to longterm remission if done early enough in the course of the illness. (That said, if a somewhat less effective inpatient continous infusion was your only option, I wouldn't turn it down.) That and explore biphosphonate (Xometa) infusions.

Sorry I can't provide links right now, but I'm away from home for a few days, and there is only so much I can do with my phone.

I wish you and your family nothing but the best of luck, but I would get on the ketamine thing ASAP. There is a thread on the forum showing doctrs across the country who do ketamine infusions. And for a second opinion and/or a new doctor, search for the site of the American Board of Pain Medicine, this is the pricipal organization that supervises (post-residency) pain management fellowships in the US. Then clivk on tge tab reading "Diplomates" for a search engine of their board certified pain specialists, where the are primarically grouped geographically. It will also show "specialty of origin," for the fields in which they did their resdencies. For RSD/CRPS my first choice in general would be neurology; my clear last choice is physical medicine.

I hope this is useful.

Mike

PS. The more people who jump in right now with useful links, the better.