Neurostimulator Implant

I have very severe chronic costochondritis and received a neurostimulator implant a month ago. The trial was fantastic! I had 95% pain relief and was able to do housework, go hiking, everything. But now that I have the real implant, there's no relief at all. They can't seem to program it to cover my sternum which is where all the trouble is and keep telling me to wait for more scar tissue to build up. I keep asking them why they don't put the same programs they used in the trial in, but they never give a response. After all, during the trial they made me keep track of exactly which programs I was using and how effective they were, etc., but then they never used them for the real thing.

My question is, is this normal for this kind of thing? With the trial, I had instant relief. My back hurt like hell, but I could breathe again which made everything worthwhile and I was expecting the same thing to happen after surgery. How do I know when it's just not going to work? Does anyone here have any experience with this? I am getting really down thinking that once again I'm stuck with this condition with no end in sight.

Mine is with St. Jude's as well. I think part of the problem is I didn't know what to expect. They were wonderful during the trial, lots of follow up and explanations. But now that I have the real thing, it's very difficult to get phone calls returned (and, no, I don't call very often), there's no follow up, and I've had zero relief. If it's not working, I'd like to have it removed and try something else but I'm afraid if I wait too long, it will be impossible to take it out or adjust it if it was misplaced. I'm suffering from a bit of buyer's remorse now. Do you know how long it takes to start working? I've had two different people attempt to program it and I only get sensation under my armpits; nowhere close to the sternum where I need it.

The programming can take several times to get right. I agree that I had mine done every few days or weeks before they got it right. Unfortunately, I didn't know to keep the old programmer so I've lost all of the programs except the one I have on right now and will have to start over tomorrow.

When I talked to my rep last night (I have a team), she actually said it could be a good thing because the other one is going to be doing the programming tomorrow and it never hurts to have a fresh set of eyes.

I also have a st Jude's, but my reps are great and always respond. If it wasn't working, I'd keep trig with the programming until something did.

On the subject of why they can't use the same programs as the trial...it's because they don't have the same system in place and the electrodes are often slightly moved from the trial ones. My rep said that the trial only has one or two and the permanent one I have has 18. They do have different size paddles too, which would vary coverage.

Good luck and don't feel bad about calling them....that is their job!