Today was the day I was waiting for. We all know that January feels like it already takes MONTHS to pass by as it is, but February 1st was the day in my mind.
Today marks thirteen weeks post-surgery from my DRG Stimulator. I was told at eleven weeks that I could start to move a smidgen more but not too much yet. At that point, I told myself that we would stay following my restrictions until February 1st. That was an extra week past the twelve I was given at surgery time.
However, it seems my time is not up yet.
As I have mentioned, my battery has been moving quite a bit lately. Last Friday while I was at my daughter’s gymnastics meet my battery was sticking out of my back an inch, described by my husband. That day I was in horrible pain sitting at her meet, riding in the car; eventually it moved again back to it’s more “flat” position.
At times, it’s laying like it should. You cannot really tell it is there except for the scar across the spot or unless you run your fingers along it. Other times, it sticks out & when it does my stimulator is not working correctly & my back is also in pain.
This morning I met with my surgeon’s PA as he was out with the flu & the rep from the manufacturer.
The assumption is that my battery has not yet scarred into place & perhaps my body is just going to take some extra time for the scar tissue to really build up around that battery. Obviously, when it moves, it affects the leads that circle my nerves being that they are plugged into the battery.
So, what’s next?
I have been advised to completely shut off the stimulator for one week. I am already really, really feeling my CRPS pain with it on & I will not deny how terrified I am of this. The point is to let everything settle back down & then go from there next week.
As for the battery right now, we wait & we hope. I have to extend my no lifting, bending, twisting, reaching restrictions for another three months in hopes by then the scar tissue is built up. I could be a super special case in which it could take up to a year. The biggest thing is to pray that when my battery moves it does not pull my leads too much. A battery revision surgery is a bit more simple, obviously, than having to have the leads placed again. But, either way, I do not want to even think of having any type of surgery quite yet. Mentally, I cannot handle that at this point in time.
I broke down. Tears were streaming down my face. Part of that emotion was frustration. When you are told twelve weeks & you are a week past that to then be told to redo that entire time period it is disappointing. Especially not really knowing if it will work!
But, more so, I think is fear. I am fearful of making it through this next week. I am fearful that I will end up back in the operating room way before I am ready. I am fearful that we may never get this stimulator to work just right & this was our last play in the play book until medical experts find something else & we never know when or if that will happen.
That is the scary part of CRPS. There is no cure. You have no idea what each day will bring you; you have no idea if you will even be able to tolerate a shower one morning to the next. You have no idea if or when it might spread; and if it does spread, how far? Does it end up consuming your entire body to the point your mobility is completely gone (yes, this happens)? Does it maybe go into remission?
As I type, my eyes are filling with tears again. In other words to me, writing is how I heal. This blog post might not mean much to you, but to me, it allowed me to express my fears & now I can walk forward working through whatever tomorrow may bring.
Until Next Time~
You can do this, you are a strong, courageous, wonderful woman. I continue to pray God will give you what you need each day. 💕