I had my first SCS implanted in August 2002. When the battery goes out, they usually just replace the battery. I have had the wire leads replaced. I have had the wire leads, which can be placed by many different types of doctors who have had the training. I currently have the paddle leads which apparently must be placed by a neurosurgeon. The paddle leads do not use as much battery power than the wire leads. They are also apparently “stronger” than the wire leads. They have come up with a rechargable battery now so you don’t have to have surgery whenever your battery goes out. When I had the wire leads, I went through 2 batteries in a matter of 20 months, but I also had it turned up all the way, going 24 hours a day, and had it set on a setting that used a lot of battery power. Now that I have the paddle leads, the battery is a little larger, and I had it implanted in May 2005, and am still on my first battery. From what I understand, with the rechargable batteries, the patient now gets a much more advanced controller than I have, and they can have MANY different settings, that can be changed in a matter of seconds, whereas if I want to have a different setting it is a better idea if I have a rep reprogram it. With any surgery or procedure, including a blood draw, those of us with RSD are at risk of it spreading. When we are considering a spinal cord stimulator (SCS), a drug pump, lumbar blocks, getting a flu shot, our blood drug levels or whatever the latest treatment is, we need to take into account the risk we are taking that the RSD COULD spread. There is actually very little known about RSD by the medical profession. I find that those of us who have it know more about it than SOME of the doctors who treat RSD. There are doctors who say it doesn’t spread at all, or from arms to legs, or whatever. Those of us who have global RSD know that it can spread like this. At first, I was afraid to take any meds, or do any treatments because I was afraid that I wouldn’t have anything when I got older or my condition got worse. I then realized that I need to take advantage of everything I can get, now. My SCS helps me a little, it takes the edge off, is it worth the surgeries? In my opinion, any little bit helps, especially when my pain was usually at a 10. If the SCS, the 20+ medications, & the lumbar shots I get every once in a while, brings my pain down to a 9 1/2, then I think it’s worth it, because it’s that much pain I don’t have to deal with. Some have gotten much better results than I have & have even been able to go to work.
One thing I think is MANDATORY with whatever treatment we decide to try, we have to go into the situation with the mindset that this WILL help. If you think anything else, you can psych yourself into making it NOT work. I’m not saying that we should be PollyAnna or delusional and think that we will be cured, because I don’t think we should set ourselves up for depression. I’m just saying that even though we may be scared, which I have been a number of times before I have had a procedure or started a medication, I tell myself that this will work somehow. It will reduce some of the pain or offset some of the side effects, or whatever the situation is. I give the new thing a reasonable amount of time, and then I look at the results with realistic eyes, as much as I can. This roller coaster ride that we are on called RSD can be VERY difficult, and I in no way minimize that, but I do have a lot to be grateful for, in regards to the RSD, and I make sure I remind myself of that, usually at 3:30 or 4:30 in the morning when I can’t sleep for the countless night in a row.
When you are looking at information on RSD on the internet, remember that you can find another website, by another doctor or patient that says the exact opposite. The “wonderful” thing about RSD is that there is no consistency in the symptoms, side effects, or even the treatments from patient to patient. We many share SOME with one another, but none of us spread the same way, react to the treatments, etc, the same. We can only do what’s best for us. If any of you have any questions for me or completly disagree with me, you all are welcome to send me a personal message.
I wish you luck in your decision!