I am on my SCS Trial day 1 (insertion day was day o) as I am sitting here with my neck brace trying not to move my neck. The leads move quite a bit that's why they say no bending your neck. I find if I do bend my neck or lift my arms overhead that the intensity of the stim changes which is a bit annoying, but it is working great. I am really pleasantly surprised that I barely notice my TOS/CRPS burning/vibratory pain. In fact, I would say it has brought my pain down to a 3-4 which is kind of unbelievable. The mechanism is that the pain nerves are distracted by the stimulation so that the pain impulse does not go up to your brain and get sensed. I am not wanting to take any pain meds during this trial except for the area in my back where the leads were put in (it is covered by a bandage and alot of gauze and lots of Tegaderm).
Sometimes the stim will suddenly get stronger because I turned my neck and then it is bothersome. Apparently, there is a new stim with a higher frequency being tested in clinical trials in the U.S. right now that has a smoother sensation that is less "noticeable" in patients and that also relieves the pain actually better than the current ones on the market. My doctor told me that one is at least 2 years (2014 or 2015) away from being available to the general patient population.
They say that during the Trial I cannot get the area on my back where the leads are wet so no showers or baths. Only sponge baths (wiping with a damp cloth). I am trying to figure out how I am going to wash my hair because also if you lift your arms above your head the stim leads will kind of move. The Trial is only for a week, actually 5 days for me. I guess after the permanent one is put in, you have these same "position" restrictions for one month except that you can take a bath/shower because they are waiting until the leads scar into a permanent place. Apparently the leads can get no higher than C2, so that is at the low neck, so if you are having pain on your face or head the stim will not cover that area.
There are different programs that the Rep programmed, some are a steady stim, some are kind of cyclical patterns. I find I like the low steady stim better. But its nice to have the different options. When I slept, I turned it way down to almost zero.
I'm really hopeful that this will allow me to eventually slowly go down of and eventually off of the Opiates and Powerful Nerve Pain Meds that are making my mind cloudly. It is because of the mental changes that I cannot work now. I will have to study and retrain for a career which will take years. The 4 years I have been on Opiates my mental capacity has gradually declined, I have a horrible memory and I am dumb. I have heard that brains actually physically shrink (as well as diminished brain function) in people who are on Opiates for a long time.
I am also not a fat person (my BMI is 22, which is the low end of normal range) and the Operating Room staff and the Device Rep kept commenting on how "skinny" I am. I am not skinny by my standards, I wear a size 2 and a size 26 or 27 jean and am 5'5". But the doctor did say that the battery would probably be palpable and visible on my body. The doctor said that the area where the battery is put in, the "pocket", is going to be the most painful part of the permanent procedure. He said that if I wear a two piece bathing suit, it will show like a cardiac pacemaker shows. I am hoping for the permanent one they can place it on my tummy too, not my flank. Right now since it is the trial, the battery pack is outside of the body on a belt that I wear with a velcro closure.
Well feel free to PM me if you have any comments or questions.
I'm so hopeful now that it has made me and my S.O. very happy today! Emotionally inside I feel like jumping for joy. (but I can't right now!)