I had my leads removed yesterday (Tuesday) morning. Let me start by saying I was even more excited to have them removed than I was to start the trial. I think I need to explain that one because I don't want to discourage anyone! I had a full 7 day trial. Most people do an average of 4. I react to procedures / surgeries MUCH worse than most people as well. By the end of mine, my skin was irritated where the leads sat on the skin, including redness & some swelling. It plain hurt, I won't lie. This all has NOTHING to do with how the stim affected me however, so please don't misinterpret. Usually patients have a day or two of discomfort after surgery, but I am STILL having back pain! Having my back taped up with wires entering / exiting was just not something my body dealt well with. When the leads were removed, there was a little resistance & I was repositioned a couple times to allow the doctor to pull them out. That part didn't hurt, but I did feel pressure & a little soreness. After they were out, my back felt at least 50% better! I could bend & move better with much less pain! Sitting back against a chair was great as I couldn't do that all week! One of my amazing friends went with me that day & was so kind as to videotape the lead removal both for myself & anyone else's curiosity! (Sorry for the poor camera quality & flipping of video!)
(Ok, so I can't get the video to upload so I will try again later! Sorry!)
After the removal we took a picture later of what remained on my back for now. It's still pretty sore to touch, but much better overall. There might be a couple little scars but nothing to fret over! I also have a sore on my left side where the connectors were taped, but that's a hazard of the job for a 7 day trial!
Now the fun part, discussing my options! It's been no secret I didn't get the coverage we aimed for during the trial. With the leads being placed at L1, it didn't work with my anatomy to help much above my knees. With that being said, and me having little pain in my lower legs during the trial, I don't feel I can properly judge the how the SCS helped my CRPS. When asked, I could only give Dr. S a 20% as far as how much the SCS improved my quality of life over the week, and I think I was generous with that number. I did not factor in my back with this as I know that pain will eventually go away. I still had a lot of trouble walking & doing everyday things due to the pain in my upper legs and hips. Still had to use a wheelchair. 20% is not enough for me to go through with the permanent SCS implant. This was devastating to me, even just to say. I think this is when the tears welled up in my eyes because it felt like failure. It felt like I lost a battle & had no direction now. This was supposed to be my miracle, my ticket to a life of having babies & doing things I used to. I was just thinking about the activities I wanted to tackle, like skiing, roller coasters & traveling! Suddenly that hope shattered as I now have to figure out what's next & how I'm going to get through each day. Back right where I was before the trial...
Though everyone is optimistic, Dr. S & my St. Jude reps, that the paddle leads on the implant will give me full coverage where I need it, there is no guarantee. Dr. S does not feel comfortable telling me the implant will give me any better coverage than what I had during the trial. Not what I want to hear, but I understand. My internal anatomy is different & I am "special" as my reps & doctors call me often. It would be foolish for them to promise me anything. It takes only one person to ruin a doctor's 100% success rate. I think I'm starting to hate percentages after this past week. To make things easier, I have 2 St. Jude reps. A female I'll call SJ-L, and a male I'll call SJ-J. (SJ is St. Jude of course!) SJ-J even tried to tweak the programming one last time before the leads were removed just to see if a fresh set of eyes could do anything different, but no luck there either. He still feels like the implant will work for me, but the leads need to be placed somewhere between T11 and T8 for me to get the needed coverage. Here's a small diagram so you can understand where these areas are.
So where to go from here? I've heard this question all too many times before. I had hoped I wouldn't have to face it anymore after this past week. We know the SCS implant is not the right choice right now. After talking with Dr. S, I could tell even he was disappointed with the trial outcome & sensed he felt a little bad, like he failed too. I think everyone involved felt that in some way. Here's the next options...
1) Ketamine Infusions
2) Methadone Treatments
3) Intrathecal Pain Pump
We talked some about these three options & I'll be honest, none of them thrill me. It's all pain / opiate related and there are no more surgical treatments. I know I don't want to be a drugged up zombie & I can't be pregnant while on any of these because I personally do not believe in putting my fetus at risk of any kind. So Dr. S and my reps left the room to talk for a bit. a few minutes later, Dr. S came back in & threw out another idea that we didn't think was possible. What about a second trial? This time placing my leads higher than they were the first time in hopes we can get better coverage & allow me to truly be able to judge how it helps my pain. Most doctors NEVER do more than one trial. It is pricey & risky. Most insurance companies won't pay for more than one either. Well Dr.S is ok with it, and turns out I will luck out with insurance because we are switching companies in January through my husband's employer! Is this meant to be? I am a woman of faith & this might be God's way of telling me what I should do. I am afraid of a second trial and going through the pain again, but when it comes down to it, I don't really have any better options anyways! It's one more week, hopefully better than the first & it could still lead me to my goals. How do you say no to that? It won't be until January so I will have some time to heal from this first one. All options considered, I think I agree this is the best thing to try... again. (Title of post being a hint)
Now that I have made up my mind on a second trial, my focus for now is getting through the holidays and having some fun. It is not going to be easy as my pain has already kicked up pretty bad in the last 24 hours, but I am trying to take it easy for now so I can get some Christmas shopping done this weekend! I had a pretty terrible night, in pain and vomiting, so I spent all day in bed today. It's helping keep the pain down. I hate being lazy & loafing around, but with severe CRPS, sometimes we have no choice. Since it is late, I shall call it a night & try to get some much needed sleep! Oh the joy when that actually happens for me! Thanks as always for reading & good night!
No comments:
Post a Comment