Day 5 - SCS Trial

   So this will be the second post this week I will start with an apology for missing posting an update yesterday. No excuses, but for anyone who's had this procedure or practically any for that matter, knows during recovery you shouldn't promise anything! Yesterday was something of a very rough day for me & after being at the doctor's office for 3 hours I was quite sore & not in a great position to write anything. But on the flipside, I do have a lot to report today!

   Yesterday morning started pretty nice, my youngest sister & her boyfriend came to visit me. She actually brought me a gift which was so sweet! Part of the gift was an Angel Christmas ornament that said "Always my sister, Forever my friend". The other part was a sterling silver necklace with a double circled charm inscribed with the words "All the strength you'll ever need is within you". I love it! It was a Christmas present but she gave it to me early because of my current circumstances. There are so many inspirational quotes, but this one truly means a lot to me, especially when there were times throughout these past 2 years that I thought I couldn't fight anymore. I thought this disease was consuming me. If the doctor's couldn't fix me, what hope did I have? And though I still have my bad days, I realized I am stronger than I thought. I have a great life worth living & a strong faith. This necklace couldn't be more perfect!

Two views of the necklace, though I couldn't get a picture of the inscription.

   So we had an appointment with my St. Jude rep and Dr.S at 3 pm to tweak the SCS programs & to change the bandages on my back since the wounds had bled so much Tuesday night. We were there about 3 hours working on the programming & trying to get me as much coverage as possible. I was pretty excited about this appointment because after the first few days, I learned more about the sensations from the SCS, where I wasn't getting coverage & where exactly I needed to feel it. During the time we were trying different settings however, we started running into some issues. It might be the placement of my leads at L1, but we could not get any coverage in some key places. I could get stimulation in my lower legs & feet decently, but nothing really above the knee.We were able to get a program that gave me some coverage in my butt (yes, my CRPS affects it) but I have to lay a certain way on my stomach for it to be efficient. We couldn't get any coverage in my upper legs, thighs, hips or lower back. This was pretty upsetting because that's where my severe pain has been recently & now I won't know if the SCS will work in those places. I will heave to go on a whim that I will get better coverage in the places I need with the paddle leads. BIG decision I'll have to make there!

Close up of the leads after they were cleaned up & re-bandaged on day 4.

Same as above, but zoomed out a little.

   I'm going to touch on a subject that I hope doesn't make anyone uncomfortable, but I said I was covering as much detail as possible during this trial! Get ready for it... Bowel movements. If you're squeamish, skip to the next paragraph! Most people will have a bm before day 4, but I have issues in that department. We have not been able to determine if it is related to my CRPS in any way, but I will tell you pain meds  definitely contribute to constipation. The reason I really bring this up is that I wanted to advise anyone doing this trial to take stool softeners. They do not work well for me, but should for most people. I took them anyways. Even on day 4, my bm caused a LOT of pain in my back because I had to strain. With softeners I've heard many people have avoided this extra pain. I'm trying to help with tips as a couple people were so kind as to do with me.
   That evening I spent a lot of time on my stomach using the "butt" program, and no it wasn't because of the bowel movement though that did play a part in the program I used. When I have a bm, it kicks up my pain  in my upper legs. My theory was that though the stim doesn't help there currently, what does it reach between there and my brain? My butt! CRPS causes your nerves to essentially "go crazy" and send pain signals to your brain. Well if the stim is on in my derriere, that should stop the impulses from my legs, right? I lucked out on this one! It truly did help! When you get lemons, make lemonade! No reason to be too discouraged after all, I just have to lay on my stomach! Lol.
   Saturday marks day 5, and I am happy to say I am almost done with this week! It has been educational and helpful, but also for me, quite a week of pain. Everyone is different & most don't have pain from the procedure for as long or like I have. I kind of knew I would have a difficult time but I needed to try this. And I don't regret it. Today I tried some tidying up at home with my SCS on and it wasn't too bad. Again, I know this isn't a fix, but it's supposed to help make my life a little better. And honestly, it has. My rep was sure to tell me today that I don't have to make a decision by Tuesday on the permanent implant, but I think I will have my mind made up. I want to decide by then. That was my goal and I feel making that choice fresh after the trial makes most sense to me. Besides, if I choose, the stimulator implant surgery won't be right away and we'll have to schedule everything sometime after the New Year. Regardless, I'm still unsure right now, but I am on my way to deciding! With that note, I think I have written enough for now. I will be sure to update on anything important, especially Tuesday when the leads come out and I have news, one way or the other! Good night and thanks for reading!!!