My GOODNESS bobbob!
What an ordeal you and your husband have been thru!
It sounds as tho the medical 'team' was not on the same page in the least.
Thank you for typing out the details of what he went thru. This is good stuff for others to read.
It seems most folks who get these units will need some sort of adjustment or tweak session(s). Very rarely will a person be up and running from the get-go. Our beloved Mark56 is the exception however. His story has amazed many people. Here is his thread in which he continues to document how the SCS has benefited him
http://neurotalk.psychcentral.com/thread117854.html
It's a great read.

One of the biggest culprits which requires repeat visits is lead migration.
Myself included, but I confess that it was my doing. I overdid it as I began to feel better and one of my leads came loose from the dura and slid down 6 inches! I don't know HOW long it had been since it happened but when I finally got a lumbar xray, that's when it was discovered. And, like you shared, it took some prodding to get anyone to give me the time of day. Lord. But (get this) >> I was doing just fine with the one good lead so we just decided to have the bad lead taken out rather than go back to the OR to fix it. I'm amazed that one lead is doing so well in covering my bilateral leg neuropathy-type pain.

Other issues can't be helped, such as scar tissue or lead breakage, as was your husband's case.

It is very disappointing to me that patients don't seem to get very good follow-up care. Some do, but alot of people are left feeling like the lone ranger once the high-dollar procedure has been done.

I would venture to say that communication is key, especially during the initial implant and getting coverage where it needs to be. Precision is paramount for a successful outcome. But it's kinda hard to be precise when you're in the twilight daze undergoing this radical procedure.

Oh my, NOW look at who's rambling

I hope others will chime in and share their experiences. Actually, we should start a whole new thread on this topic so that it'll be easy to find for those looking to see possible forseeable problems.

Rae