I had a SCS implant put in on April 5th for severe sternum costochondritis and have yet to be able to use it. When I had the trial, it was 100% effective. It felt like a miracle that I was able to go hiking, do housework, basically everything I've had to give up for the last two years. Now that I have the permanent one though, they can't seem to program it correctly to give me any relief.

I've been extremely disappointed. The St. Jude's rep was wonderful during the trial. They followed up, answered questions, happy to help. Now that I've got the permanent implant I can barely get phone calls returned, etc.

At what point do I know that this just isn't going to work and needs to be removed? Do they just throw away the data they use about programming during the trial? They kept asking me then which programs helped and which ones didn't while I was in the trial, but now never refer to them. Do I just have to keep reprogramming every week? Is this normal?

I hope they get you on track fast !
My surgery date is may 28th and I hope my scs will be better ! I feel for you!

i've had experience with the reps at st jude. you need to ask for another rep and they will give you one who should be able to help. do you feel stimulation in the area that hurts?......pal pete

None at all. With the first rep, I could never make him understand that I needed the stimulation across my entire chest area and he would only program for one side or the other, neither of which came anywhere close to the affected area. The second rep at least understood that I need both sides. So now I have sensation under both armpits instead of one, but nothing in the center of my chest where the pain actually is. I'm getting really worried that it was misplaced, but they keep saying, no, we put it where it's supposed to be according to the x-ray.

Sorry you are having such trouble Arvella. I agree that you need to request another rep. I have two St. Jude stimulators (cervical & thoracic), thankfully my reps are pretty good a very responsive.

They should have all your programming data in your file, but if you are referring to the programming data from the trial that information would be fairly useless for the permanent (except for where to place the leads). Leads are more secure now then in the trial and stimulation is usually a little different. I did have to go back almost weekly at the beginnng for reprogramming, after a while it was no longer necessary as they were able to give several useable programs on each stim. It is not uncommon to need several tweaking sessions at the beginning. Don't give up.

Wishing you the best,
Nanc

Hi Arvella
I have a Boston Sci stimulator. There are three reps who cover the area I live in. My first rep was great, spent a lot of time getting the stimulation in my upper abdomen, right in the center where I needed coverage. The initial implant took a long time to cover the right spot. Then my rep was transferred to another area. The other reps tried to tweek as necessary but never quite covered the spot. My first rep happened to fill in in my area and immediately was able to adjust the settings. It's all about patience and experience. Don't give up. Let your doctor know how frustrated you are and ask for another rep,, maybe the territory manager who might have more experience.
Good luck.
Sandy