Originally Posted by Patti_Christmas

Hi Fiona,

I had a great trial (or so I'm told) that really was one day out of 7 that provided excellent coverage. I was also told that I had a problem with lead migration and it was decided prior to the permanent placement that I would have the "surgical implant" route as opposed to just the lead placement. (This was in July/August of 2010)

In Sept of 2010, my stim was implanted. They either "forgot" or didn't bother with the surgical placement, and I suffered horribly with the stimulation not covering the correct area. I felt the stimulation in my chest, my abdomen and my other leg. The doctors kept insisting that the lead placement hadn't moved, and that it was possibly due to swelling and that I was a slow healer (which is common in RSD patients). Everything that I was suffering from seemed to baffle them, and I too heard the speech. I was seeing the docs and Medtronics Reps weekly for re-programming. For some reason, the stimulation was even making me come up off the table, and would sometimes jolt so painfully that I would loose control of both legs. At this time, my battery (which was protruding out about 1/2") had positioned itself to where it was very hard to communicate with the controller.

At one appointment, my "implant doctor" wasn't in the office and another doctor came in when the rep said that there was a problem. This doctor came in, checked things over and decided I needed another surgery where the leads would be placed by an orthopedic surgeon. It wasn't necessarily that the wires had moved, but more of a problem with the nerves themselves (of course they aren't going to admit to any wrongdoing on their part), and that the battery needed to be moved (duh....).

So, off I went to see an orthopedic surgeon for him to evaluate and get a plan of action. Surgery was scheduled for Dec, and he had planned on placing a paddle, as this would prevent the chest and abdomen sensations, and was a more "direct and stable" contact to the desired nerves.

Well, this was a flop. I was suppose to be able to have the stim on immediately following this surgery, but again I had the sensations in other parts when I would move. It was decided that things were too swollen and that with the swelling, the stim's sensations were being affected. (I also found out that the reason the battery moved in the first place was because the doctor had implanted it under a stretch mark which is a very, very thin unstable location.)

At my 2 week check up with the ortho doctor, it was noted that the swelling was still incredible. I was also experiencing new symptoms of RSD in my back, shoulders, arms and fingers. The doctor told us to contact the pain management doctors immediately (as they would also with their office notes) because this needed to be dealt with as soon as possible because it would be very problematic.

At the pain management clinic I go to, they really don't give you a "set" doctor. My initial doctor though did say it was just swelling and that I had undergone two "tough" surgeries in a short time and to give it some time. I saw another doctor at his office, and he said it might be meds, so he was changing them (changed my vicoprofin to vicodon) and was planning on looking in my Lyrica dosage and then boom - he's out of the country, so I never saw him again, nor did anyone continue with the investigation into my meds. The last doctor I saw there (is the one that is now my assigned doctor) is the one that finally decided the RSD has spread/flared due to the surgeries placing the stim. He is now attempting to treat this with blocks which to date have been ineffective.

I have my stim off again because of chest wall and abdomen sensations. I had to wiggle to get the coverage in the right leg from the day of my implant. One rep said just to pretend I'm trying to tune in a tv with rabbit ears, one rep said absolutely no tuning in and reprogrammed me once again. All this time, I have heard the same thing - "we don't understand what's going on - you had a great trial".

I ask myself all the time - was this "pushed" on me? I should have done more research before agreeing to this, but I was so desperate to have any type of relief, to have some normalcy in my life again that I agreed to it. They kept (and still do) insisting that it will work, I just have to heal. I've questioned and thought about removal, but that's another surgery that I don't need to put myself through at this time. I've even thought that the doctors and reps push this device, sometimes it works - sometimes it doesn't, but in order for their "numbers", does it have to stay in a person for a certain length of time? I know that we are "registered", so does that make their sales look better? Their companies look better even though it isn't working for an individual? Do they "report" the problems or try to get their patients to stick with it so their sales look better? Once they remove a unit after being fully paid for "new equipment" are they able to once again make money for selling a "used" device? Are we truly patients or are we just part of the "numbers" game that keep companies in business?

(Sorry for the rant, I just wanted you to know you aren't alone, and if you have questions, demand answers other then what you are getting! It's your body and this site is much better for answers, questions and research then the doctors, reps, etc)