Hi Maryjuju,
I have had a Medtronics neurostimulator for 5 1/2 yrs now. My case is a bit unique in that my stimulator is not for back or leg pain, but for facial pain (leads are on branches of the trigeminal nerve in my face). For me, the stimulator was a last resort, and has provided some relief when nothing else did. That being said, the relief that I get from it is limited. This is mostly because the area that it covers is not as extensive as I would like, because there is just no way to physically get the leads into the area where I need them the most without major risk -- but I knew that going in. However, I also feel like the relief that I get from the stimulator has decreased over the years. I'm not sure if this is because of progression of my disease/increased baseline pain levels, or because my body has just become "used to" the stimulation over time, and thus it is less effective at drowning out the pain signals. Unfortunately, no one can really give me an answer, and I don't know if this is a common phenomenon or not. But even though it seems less effective now than it once was, I still use it almost every night, and would still go through with the implant if I had to do it over again, because it still gives me some relief & I'll take every little bit of relief that I can get.
Fortunately, I have not had any problems with my hardware (leads or battery) since getting the implant. I have had a few minor issues with the remote and charger over the years, but nothing related to the actual stimulator, and Medtronics replaced the defective devices at no additional cost. The biggest issue for me, like Susie mentioned, is the cost of maintaining the system. No one told me before I had the stimulator implanted that any time I needed my system checked or adjusted by Medtronics (generally once a year for maintenance, more frequently if there is a problem or I feel that I need an adjustment), I would be billed $3000+!! Ultimately my insurance pays for some of it, and they write off the rest, depending on the status of my deductible. But it is always a fight to get insurance to pay, even though they paid for the original implant. So additional costs like this may be something that you want to check in to before your surgery so that you are not surprised down the line (although I will say that someone I know with a St. Jude's stimulator has told me that she has never been charged for reprograming the way that I am charged by Medtronics). Also, the Medtronics units are all programed to shut off after 9 yrs. So regardless of whether your unit is functioning perfectly or not, you will need the battery replaced (which requires another surgery) every 9 yrs. Even my Medtronics rep agrees that that sucks & is mostly just a money-making ploy. Don't know if that is the case with St. Jude, too, but I wouldn't be surprised (I didn't have a choice of which brand of stimulator to get, so I am really only familiar with the specifics re: Medtronics).
All that being said, my Medtronics reps have always been really great. The reps are definitely a great resource to be utilized both during and after your trial, so that you can get your unit functioning in the best possible way for you and your specific preferences. If during the trial, you are not getting any or enough relief, or are not happy with the areas of coverage/programs, etc, don't hesitate to contact and meet with your rep. The trial period is all about
playing around with the unit and finding out what, if anything, works for you. And sometimes you have to make changes in order to really explore the unit's potential.
I think that neurostimulators are very personal things. So it is hard to say how you will like it/whether or not it will help until you go through the trial. What helps for one person may not help another person with the same exact condition. Some people don't like the way the stimulator feels, some do. And some find that it is annoying, but more tolerable than the pain. You won't know until you try it. My advice is to really play around with it for the week. Make adjustments, rotate programs and frequencies, and go about
with your normal routine as much as possible during the week, so that you know what to expect with it on good days and bad. Once you have the permanent implant placed, it is just that -- permanent. It isn't always possible to remove all of the hardware (or at least not without extreme difficulty) once the unit is in place and scar tissue has formed, if you suddenly decide that you don't want the unit anymore. So don't make your final decision lightly. I think that they say that 50% relief should be the cut off for implantation. But personally, I think that however much relief you get -- whether it be 80%, 50%, or 30% -- just make sure that that relief is enough for
you -- that
you are happy enough with the amount of relief you are getting to justify the permanent implant, because ultimately it is
you who is going to have to live with it, not anyone else, and as long as
you are happy with the amount of relief you are getting, that is what matters.
Hope your trial goes well. And don't let other people's horror stories that you may read here or elsewhere scare you away. Again, it is all about
your experience, and how
you feel. If it helps you enough, go for it. If it doesn't, walk away.
Skeye
PS -- Many people find that they get somewhat more relief from the actual implant vs. the trial stimulator. This is because the real stimulator is more versatile in it's functioning (more programs, wider range of possible frequencies/band widths, etc) & the permanent leads may also be better/have more contacts (depends on whether or not they use different leads during the trial vs. the implant). But don't rely on the permanent unit functioning better than the temporary one when you make your decision regrading the implant. If it turns out that that is the case, then that is a bonus, but it may or may not be, so you have to base your decision solely on the amount of relief that you get during the trial.
Post Edited (skeye) : 12/17/2015 7:00:22 PM (GMT-7)