reply to post by OkieDokie
Hey there, I just wanted to update because I FINALLY had my trial Spinal Cord Stimulator done this week!! I almost wanted to start a thread, but
didn't know if anyone would find it interesting, on my experience so far. It has been a HUGE success! I bet there are people on here who would think
me crazy for putting something like this in my body, but after 10 years of this crap, and the last two years progressing with my RSD and driving me
nuts, and exhausting most other options.. I had to try it.
It really REALLY was a success! The procedure itself wasn't that bad at all. I have been to that surgical center 12 times this year for procedures,
and I have a really good relationship with the Anesthesiologists and nurses. They even hugged me before going into the OR LOL They knew I was really
nervous this time, because I would have to be awake instead of being asleep like usual when I have nerve blocks done. When we discussed the being
awake part, I pulse rate shot up to 131, my face was beat red, I felt nauseous. But they really made me feel calm, and my doctor is absolutely
wonderful, and I felt like "If I trust them when I'm asleep, I can trust them when I'm awake".
She actually did end up putting me under for a bit because it took A LOT of tries for my doctor to get into my spinal space, because I don't have
much. So I felt this crunching pressure feeling in my spine, and while it wasn't painful, it creeped me out! And the Anesthesiologist could tell, so
she put me under. They woke me up when everything was in place, so I could let the rep from Medtronic (The company that makes the SCS we were using)
when I began to felt the stimulation in the right place, my foot. Once we got it into my foot, I was put back under while my doctor placed everything
and woke up as they were taping everything down. I found out it took an hour and ten minutes, instead of the 45 minutes they expected it to take,
because it took about 10 tries to get into my spinal space. They also warned me I would be in more pain than most, but.. I wasn't. I actually have
had no pain in my back. Even less than a regular sympathetic nerve block!
In recovery, when the rep turned the SCS on for the first time... I almost cried. My toes uncurled and straightened out. My foot came out of its
clawed position. The redness diminished. The temperature even raised. And best of all, I wasn't noticing the burning pain. She ran to get my doctor
because she was so excited haha. I only experienced a really awful pain for about 2 seconds when I tried to sit up the first time, and it was such a
strange pain that it brought me to tears. They wanted to give me pain medication, but I told them it was okay, I just needed to get my bearings. I was
fine after that. The rep gave me 5 different programs, I told her I build computers and am good with technology, so she didn't have to worry about me
not understanding how to work the stimulator. Each one controls different leads.
It's just the coolest thing. You can raise the stimulation, lower it.. you can even change the "type" of stimulation, from a constant vibration
type of feeling, to a pulsating one.
I walked around the block without my cane for the first time in 7 years. SEVEN years. I was able to stand up on both feet, no support, for 20 minutes
without getting the stinging prickling pain in my bad foot. It was just incredible!! Unfortunately, since this is just a trial, the leads are not
anchored in. So just a millimeter of movement of them will shift them and screw everything up. I was told not to bend, twist, lift anything above 5
pounds. Also can't shower while it's in, since the wires are sticking out of my back (Though they are covered with a ton of bandages and tape).
Well, I sat up in a strange way Thursday night (After about 28 hours of having it in) and I knew right away I did something bad. I got a horrible
pressure in my lower left back and then the stimulation only zapped my spine, not my leg or foot. So I turned it off and unplugged it.
With the permanent, it is anchored in place so that the leads won't move like that. And even though it's called a "permanent implant", it can be
taken out. I also wouldn't have the paddle leads, which involve needing a laminectomy, so it's still considered minimally invasive. I honestly
don't care if it's invasive, because this can give me my life back! Back to school, back to work, wearing socks again on my feet, wearing normal
shoes! Monday I am having it removed (Very easy and quick to do) and we will start with getting the permanent approved.
Also, the lumbar MRI I had on Monday (My doctor needed one of my back before he went in) showed some scary things. I apparently have a large cyst on
my right kidney, If not for the MRI, I never would have known!