Posted 12/15/2008 10:47 AM (GMT -7)
Welcome! So sorry to hear what you're going through. That sounds really horrible what you're going through. I remember I used to feel like that when I first got my stim, but 2 years is plenty of time for it to settle into place. That's really awful that they migrated. I thought, though, that even if the leads migrated they would still stay attached to the battery. My PM told me that was why they put the cords in a swiggly line to make sure if they migrated that they wouldn't come unplugged, just that I wouldn't be getting good relief anymore. Sounds like that definitely didn't hold true in your case. I think you should definitely get a second opinion before having anything explanted.
I don't have the Medtronic implant; mine is made by Advanced Bionics. I have some probs with mine. It gets very warm & feels like it's burning around the battery pack -- more so when the stim is on, but still some even when it's turned off. Plus I get tingling feeling down my legs. The reps came to my doctor's office and did some tests. Everything came back close enough to normal & it was determined that I have a nerve trapped either under the battery pack or inside of scar tissue. I was told by my PM & NS that explanting would create more scar tissue & there is a 50/50 chance my pain could get even worse if we take the battery out. So, for now, we wait.
I think at a minimum you should ask if you can meet with a Medtronic engineer to test if there is something wrong with your stim. The lead migration could affect whether or not you get the same relief, but I have always been told that it would not affect the safe functioning of the stim (although maybe yours is different from mine). They ought to be able to figure something out without having to cut you open, I would think. I assume your doc already did some kind of flouroscopy or CT/MRI to determine that the leads definitely weren't connected with the battery anymore. If not, get that done ASAP so at least you can see what you're dealing with.
I don't know whether it's any help, but here's what I have tried for the probs I've had:
1. Reset all programs to blank, then reprogram the unit.
2. Change out the batteries in your remote (never know with these things, sometimes there's a prob with the little Energizer batteries & that can cause the unit to turn itself on/off). The last time I bought ones especially made for medical devices. They're more expensive, but they also last a lot longer. You can get them at any grocery store (or prob. discount & drug stores also).
3. Recharge your unit.
4. Borrow a different remote from the company for a short while to see if that makes a difference.
5. Get a meeting with a Advanced Bionics engineer to run every possible test on the device (takes a long time, but no surgery is required).
6. Get a new charger & see whether that makes a difference [I'm going today. My charger was recalled b/c people said it was too difficult to use properly].
7. Get a second opinion.
Hopefully something I've said helps. I really don't know what else to say. Best of luck to you! Let me know how it all goes.