So far not too much has changed since yesterday's post, though I'm more aware of how the SCS is working. Today Dr. S called me to check up on me & to check on the bleeding. It is pretty dried up now, so he said that was good. Sometimes it happens, but I will be back at Emory tomorrow so he mentioned we may change the bandages since they are a bit soggy / peeling off. My St. Jude rep called today as well. She told me she'll be calling every day to check on me, see how the SCS is working & answer any questions. She's very nice & understanding. I think it's very important you feel comfortable with your rep as you will be in constant contact with them throughout the trial & even with the implant. When I go in tomorrow, she will adjust some of the settings on my stimulator in hopes of getting even better coverage.
One issue I noticed is that my right leg gets a lot more & stronger stimulation than my left. I actually need it the opposite way as my left leg is a little worse. I also need the area's of coverage tweaked a bit. I feel a lot of the vibrations in the back of my legs which are not really affected by my CRPS. Most of my pain is along the outer sides of my legs & on the top of them. I did have a flare-up in my left leg today & the coverage was not quite adequate enough to help the pain much. I also get pain from my toes to my lower back. So far the stimulation is not getting above my thighs. That is something else we need to address. Dr. S told me we probably wouldn't be able to get my back covered or we'd have to sacrifice my feet. Since my feet are worse, I opted to keep them covered. I should however still get stimulation into my hips & hopefully butt. We will see tomorrow how much we can change the programs to help.
I am still learning how to balance the stimulation in each leg & I continue trying each program so I know what works versus what doesn't. Today I have been lying down a lot. Pillows & ice continue to be my best friends. Thank God for my hubby being able to work from home & catering to my every need. He's amazing. I am still in a lot of pain from the procedure itself, but I knew it wouldn't be easy. I don't think I was prepared for just how much I'd hurt after though. Not everyone reacts badly to procedures like I do. I don't want to scare anyone. Even with nerve blocks it took me a week of recovery, compared to most people with a day or so. I get told I'm 'special" a lot. Lol. Not the good kind I fear! But that's ok, my body is just different. I do know already based on how my recovery is going for the trial procedure, that the implant surgery is going to be really tough. The ultimate question is if that surgery will be worth it. So far I've noticed a good change but time will continue to tell. I am still very optimistic! I will post again tomorrow after my appointment & hopefully put up a new picture with the bandages changed so you can see the lead placement better! Here's hoping for an even better day tomorrow!
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