Day 2 - SCS Trial

   First I have to apologize for not posting yesterday on day 1 lie I had planned. For anyone that has had a SCS trial, they know day 1 is not easy. In fact,, it was downright awful! This will probably be the longest post this week as I try to walk you through everything that happened during surgery & overnight. A few minor details first. The surgery was at Emory Hospital in Atlanta. We had to be there at 2pm for the procedure at 3pm. It lasted about 1 1/2 hours & then we spent about an hour with the St. Jude reps. We ended up getting home about 7pm. It was a long day which followed a sleepless night for me (due to nervousness & pain).
   Ok, so after we got to the hospital they started me on an IV with fluids & antibiotics. I don't think the antibiotics are something given to everyone, but as I've mentioned before, I have a compromised immune system & Dr. S didn't want to take any extra chances of me getting an infection. Just prior to going back to the OR, two St. Jude reps came in to talk to me & the hubby. I guess unlike a lot of people they've worked with, we didn't have many questions because we had done our research over the last year on stimulators, including using their ambassador program. I think they were actually impressed! Lol. I did get to see / hold a sample lead & Eon Mini Stimulator which was pretty cool. It's comforting to know what's going to possibly be implanted in you to say the least! Then Dr. S came by to go over a few things, including the risks, restrictions & positives of the trial. He always makes us feel pretty optimistic & he has a great bedside manner. Then, it was time!
   So in the OR, they had me lay flat with a pillow under my stomach. I was given oxygen as a normal precaution & then my back was cleaned from shoulders to butt with Betadine. Gotta love that orange dye that stains everything from your skin to clothes! Quick tip: Rubbing alcohol works best for removing this from your skin, more so even than soap. I was then given some "happy" meds to take the edge off. Problem with that is I have developed such a high tolerance for meds in that category that it wears off really quickly. I don't remember how many "margaritas" (What Dr. S calls it) I was given but it never seemed like enough! Lol. A bunch of towels were draped over my back & then a long drape was laid over my head. This was a little nerve racking because I couldn't see what was going on anymore! It was also overwhelming because I had 7 people other than myself in the OR! There was Dr. S, his assistant doctor, 2 St. Jude reps & 3 nurses. It's a small room too, so it seemed organized but chaotic!
   Then the procedure began. I can't explain every little detail of what went on but it was 1 1/2 hours of the doctors trying to make sure the leads (one for each leg) were placed correctly, checking the coverage I was getting from them & then suturing them in place. I will attach pictures at the end of this post. I never cried during the procedure, but there were a few moments I had some pretty intense pain. A couple of times the right lead was causing sharp pain on the right side of my back, so it had to be moved. The left one seemed pretty ok. Perhaps the worse pain I had during the whole thing was when the leads were being sutured in place. The lower part of my back was numbed about 5 times with Lidocaine & that burned horribly! Everything else seemed like a breeze in comparison! After that was done, I was bandaged up, helped off the table & walked (yes walked, no wheelchair!) into the recovery area. My husband was brought back at this point & my rep sat down to help program my SCS.
   While sitting with the rep, I was given more pain meds because my back was just killing me. I felt very stiff & like I had just gotten into a fight with a car... and I lost. The programming of the stimulator was pretty tricky. I apparently am VERY sensitive to any slight movement when the stim is on. We had to set the starting points of stimulation pretty low because even with a turn of my neck or moving my toes was giving me a sudden shock at first. This was not comfortable by any means! It actually scared me a little at first because I wasn't sure if this would continue all week. We eventually got 3 programs downloaded for me and I was shown how to tweak them to make them more comfortable, change coverage or how to control each leg separately. Getting in the SUV was not easy! It was a bit high & I had to stretch to climb in. Thank God we keep a pillow in the car for me usually, so I was able to put it behind my back. That helped absorb the bumps on the ride home through Atlanta & traffic.
   Once we were home I started to realize just how hard the recovery part of this surgery would be. I needed help to sit on the toilet & I don't want to be graphic, but the point of this blog is 100% honesty on my journey. It was not easy to wipe after going to the bathroom! You can't twist, bend or put your hands above your head, so aside from the restrictions, I also had a lot of pain as my meds were wearing off. I was using my walker, which I got months ago to help walk with my CRPS, to lean on & for support. The hubby was inches away from me whenever I was up as well. At one point later when I was standing, my hubby lifted my shirt to check to make sure nothing had moved or changed because I thought it felt wet. It scared him when he saw quite a bit of blood covering the area where the leads exited my body. We expected swelling & some blood, but not quite this. We got me upstairs (again, not easy!) to try to get ready for bed & I went to use the restroom once more. Now my back was getting itchy & still felt wet, so I reached around right above my bottom & felt something wet. When I pulled my hand around, I saw blood. I got up & we realized the blood was smearing inside the clear bandages & had smeared out the bottom edge of the bandage. We placed one more regular bandage over the "leaky" area & the hubby decided we needed to call the doctor.
   When the on-call doctor called us back, she said not really to worry unless the blood seemed to be coming out at a somewhat extreme rate or there was so much that the bandages were coming off. Neither was the case yet, so we agreed just to keep an eye on it & try to get through the night. I was using ice packs for 20 minutes every hour on my back to help the pain & that was such a relief! Having CRPS, ice has not been a friend of mine! This time, I couldn't live without it! I was also taking Percocet prescribed by Dr.S for the pain, though that wasn't much help. After finally getting into bed, again quite a struggle, I fought to get comfortable. Depending on which side you sleep is where the doctor tapes the cords for the leads. I had either my stomach or right side to sleep on, but neither felt sufficient as the pain got worse & worse through the night. I cried... a lot. The pain in my back was terrible. I kept my hubby up getting me new ice packs, helping me go to the bathroom & just talking to try to get my mind off the pain. Finally about 4am I switched back to Loritab (what I was taking before the surgery) as the Percocet was doing nothing. With that & a new ice pack, I eventually dozed off around 6am. From 6am-noon I was in and out of sleep. Between pain & my phone going off like crazy, I got very little rest in. I'm typically used to this, but last night was extremely exhausting. Oh, and another FYI- sneezing, coughing, laughing, peeing & crying all increase your sensations from the stim! I did all of those things overnight & let me say hello shocks! It's not painful shocks, but they are uncomfortable, so be cautious!
   This morning / afternoon things got a little better. I still needed help moving around some & getting downstairs, but it was getting more manageable. I know it will take time & the back pain won't be there forever. Here's the ultimate question....

                                                IS IT WORKING FOR MY CRPS??????

My lower back before SCS trial

Two leads for legs, lower back, sutured & taped

Again... Sorry for the icky blood!

This shows the connectors taped to my left side that connect the leads to the programmer / battery

This is the programmer / battery pack for the SCS. It has a clip so I can put it on my pants.

  
   So far so good!!! I'm keeping the SCS on at all times, learning when to turn it up or down and being more careful of my movements. But my legs- they feel pretty incredible already! During the night my normal pain kicked up a little & so I turned the SCS up, and I didn't feel the pain anymore! So far I've only really used one of the 3 programs I have with a few tweaks & it's doing exactly what we had hoped! Another thing- my feet (the beginning source of my CRPS) have been like ice blocks for 2 years now. I could never get them warm, many times even with layers of socks or blankets. Since last night, my feet feel like the same temperature as the rest of my body! I told my rep that today & she though that was pretty incredible too! I've been in so much pain for 2 years, and this after just 24 hours is giving me a lot of hope for the future. Only time will tell if this is the route to go, and it's only day 2, but so far it's been promising! I will keep posting all week with any updates or changes! Please keep me in your prayers!