Post Edited (BionicWoman) : 4/30/2009 11:20:53 PM (GMT-6)
Wow! Bionic, you really had to wait quite some time for the permanent implant. My PM took 2 weeks from the trial to the permanent surgery & that was only b/c it was split by Christmas vacation. Usually he would only put 1 week in between. Fortunately, his practice has their own surgical center & so they don't have as many obstacles to face with scheduling the OR. BS has a lot of reps (at least in my area), so it was no problem to get someone out to the OR. It wasn't my usual rep, but I figure they're all trained the same anyways. My PM did pre-cert the trial & implant together with my insurance. I'm not sure whether that's always possible, but perhaps it is something to look into for those of you who are considering getting this procedure done. Of course, if you are getting the paddles & have 2 different surgeons doing the trial & implant, that probably isn't possible, but I know for me that was the hardest part knowing that I could get relief from the SCS & then having to go without it for a period of time whilst waiting for the implant surgery.
There are ways to use the permanent leads for the trial, cut off the external part, attach a connector & add on an extension cord (or 2) to run down to the battery pack. One NS I interviewed did that. He is one of the first people who ever did neurostimulator implants in the U.S. & trains many of the doctors in the Midwest on the procedure. He actually trained my PM, but my PM decided to do it differently on the advice of the BS rep. I'm quite happy with the result, so perhaps there is something to that, but I do think there are certain cases where people have had multiple surgeries when you only have one shot at getting the leads placed right -- in those cases, maybe starting with the permanent leads is the best option -- but I'm with Bionic that I would rather have them removed (miserable as it is to have them re-placed).
btw -- I think the pics that Bionic posted are really fantastic. I saw the samples of them that the BS rep brought for my decision meeting prior to the trial & had forgotten about the part that the cord that runs from the external battery to the leads actually looks a lot different from the permanent one that runs to the internal battery; I think it's really neat that they put that out on the web. So cool! :)
First off, let me point out that while what happened to the other member was tragic, to be sure, she got her implant back in the mid nineties. Technology has progressed significantly since that time. I have my leads implanted at C2 & definitely have not had any issues with that at all. My PM was very honest with me that when I got mine implanted that he had only done a few dozen of the implants. He has a very knowledgeable rep there for the surgeries & the rep guided him along. It is not always the case, but in my situation the BS rep was a surgical nurse in his past life, so he actually understood anatomy & such better than most. He guided my doctor through step-by-step & when they had an issue with the cord not being long enough, the rep was there to step in & troubleshoot.
With any procedure, there are risks. Anything at all -- PT, meds, injections, etc. carries risks. Epidurals are generally quite safe, but a very minor mistake last fall ended up causing an air bubble to pass from through the dura to the veins in my head & a massive stroke was a very real possiblity. Fortunately, I called & emailed my doctor night & day until we figured out what was wrong & then he put me on meds & bed rest for 3 weeks to resolve it. So I really think that nothing is going to be perfect. However, safety of surgeries for SCS implants has vastly improved over the past 15 years. You should be cautious, but also understand that the risk of anything more than an infection (which granted would be dangerous, so proper wound care is essential) is very low.
Let me clarify what I was saying about the trial leads. I don't know & have never heard of anyone ever who had their trial leads left in after they decided not to go through with the permanent implant. It is so easy to remove the leads that it makes no sense to leave them in if they're not going to be used. In my case, an untrained nurse who didn't even know what an SCS was removed mine b/c my PM was out on vacation the week I needed them removed. All she had to do was snip the 3 stitches that were holding it in place & then gently pull. It didn't hurt in the least. I even know of one person who had the permanent leads put in for her trial b/c she had had 18 surgeries prior to her SCS trial & the doctor wasn't sure he would be able to get a second tunnel to the right place. Even in her case, when she decided not to proceed to the permanent implant, the leads were pulled out without any pain or problems.
Only your doctor knows the full picture of your unique case; still, it is such an unusual recommendation that I would get a second opinion. As a minimum, maybe call the sales rep & ask them about whether the leads are even approved to be left in long term & what research is available comparing the benefits & risks of leaving trial leads in vs. taking them out.