Today the hubby & I went to see Dr. S for my pre-op appointment before Tuesday the 17th which is dun...dun...dun... my 2nd SCS trial!!! It's only a few days away! I'm excited, worried & optimistic overall. I know it's very hard to stay positive when so many things go wrong, but I've found that once you get to that continuous point, it's easy to maintain that outlook. As long as God wakes me up every day, I cannot be negative! So I feel this time the trial will work! I feel better about this re-trial because I'm not going into this one blind. I know what to expect so I will be better prepared & I know what I need to get from this now. I know the questions to ask my St. Jude reps & I am better educated on the experience so that I can feel comfortable in making my final decision after this.
Dr. S mainly wanted me to come in today so that we could talk about my pain, why it's increasing so much & to talk about lead placement this time. We have no real explanation why my pain is increasing the way it has been. I have no break in the pain & any movement seems to set the pain off these days. I cannot lay on either of my sides or back for long due to pain. I cannot stand for long or sit too long. I have extra padding on my side of the bed to help with comfort though it only helps a little. I've been bed-ridden almost 3 weeks now. I get up to shower, eat & use the bathroom. That's it. I only leave the house when going to a doctor's appointment. Sometimes I think, "what kind of a life is this", but I know the clouds have to part sometime. The hard part right now is just dealing with the pain because I don't have good management over it right now. Even the morphine I was put on last week isn't phasing me. It doesn't even make me sleepy! So far I've only gotten two things from taking morphine - itchiness on my neck / chest and constipation. Dr. S is not a fan of opiods because of the side effects they cause & the fact that a person will eventually always get used the pills, resulting in the need to continuously increase the dosage for any effect. I'm also not sleeping well if at all. Instead, he wants me to try something new that could help as a muscle relaxer, pain reliever & sleep aid. I will be starting that this evening. Hopefully it will help my back during the second trial as well so that I will be able to focus more on how the SCS is working.
The other main thing I mentioned we talked about was lead placement this time. If you've read my other posts, the leads were placed at L1 the first time. We are going to start one level higher this time, and Dr. S will move them upwards if needed depending on the coverage I'm getting. We could go as high as T8 or T9. We also talked about the possibility of using 4 percutaneous for the trial rather than 2. He would place 2 side by side, then 1 on top of each of those. This would enable me to get wider coverage though could be more uncomfortable for my back. I'm not thrilled at the idea, but I said I'm willing to try anything at this point. It's only a week. (Yes, I decided to do another 7 day trial.) I can make it! If 4 leads are used, that may show us that for the implant it would be best to go with two separate paddle leads with one on top of the other. It's not common, but it is an option. It would mean the surgery will be more difficult both for the surgeon and for myself. Regardless, if it helps, it will absolutely be worth it! Right now I'm going to focus on the trial & not the permanent surgery. No reason to get scared right now!
I'm hoping before the trial starts that I can get another post or two in, but we'll see. I want to start touching on other things that affect CRPS as well as things having CRPS affects. One of those things in particular is depression. I feel there is almost something taboo about the subject & it shouldn't be that way. I want to tell you about my battle with depression & let everyone know it's something not to be ashamed of. It's another disease we didn't ask for. But that's for another post... I would like to ask for any recommendations anyone may have on subjects for me to write about. Anything is game; nothing is off limits. Any questions are also great! When it comes to CRPS, my life is an open book. I know I had tons of concerns & questions when I was first diagnosed & I felt I had nowhere to turn. I want to open myself up as an outlet for anyone else that feels the way I did. We're all in this together! Thanks for reading! Hope everyone has a great evening & a pain-free weekend!
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