Wow, I am not sure I can quickly account for the past five weeks of my life, but I can give a relatively quick update and promise that I will be sharing the lessons from all of it, as I am able to do so!
Let me start where I left off last month…I was ready to do this surgery differently and was certainly more receptive to allowing my friends help me more than the previous surgery. I was proud of finding myself so receptive, and as it turns out, it was a good thing I was feeling like going with the flow whatever happened next.
The very simple surgery scheduled for March 15th ended with a removal of my baclofen pump and to another surgery for March 22nd to implant a new pump. Fortunately, as I have mentioned in my Lessons from the Pump post, I made plans for every contingency last fall with that revision surgery.
While I didn’t need to implement those at that time and I had fewer of those concerns entering this surgery, when I awoke in the recovery room with the nurse telling me that they had to remove my pump, these plans immediately were implemented.
I think I had forgotten just how difficult it is to have a complete thought on the oral medications, never mind how ineffective these oral medications are at managing the symptoms of my illness. That first week will certainly have a couple of its own blogs because in spite of the many challenges this week brought, I could not have been more ok with what was happening (after my initial freak out in the recovery room, that is). I want to share this more specifically because while I was challenged to think clearly, clarity was ever present.
The second surgery was a bit more complicated, as implanting a new pump comes with a few more incisions, including one in the spinal area. The new pump is fancy and has many bells and whistles that my other one did not have. I anticipated a longer recovery time and more challenges related to the surgery, but the rest, I can honestly say I did not consider.
With a new pump and the circumstances of the pump removal, we essentially had to start over to find the optimal dose. With each increase, the body has to become accustomed to again having this medication delivered into the spinal fluid. For a while, the process fascinated me, until the pain of the incisions waned, and I could better assess my symptoms.
At 3 ½ weeks post implant, I am only at about 40% of the dose that was optimal to manage just about all of my symptoms, all of the time. I want to step back here to share some things about Primary Lateral Sclerosis as it has manifested for me over the last eight years—while walking is certainly affected by severe spasticity, there are several other symptoms that make it a challenge as well.
Constant spasms in the voluntary muscles seem to present themselves a bit differently for each of us with the illness, so for me, this has been both upper body and lower body. For me, it has created a challenge when my brain tells my fingers to type, or the mouse to move a certain direction, and my arms, hands, or fingers do not comply with any accuracy. A similar disconnect with regard to where my feet go next and what I ask my legs to do happens for me in the lower body.
Balance, coordination, and some very interesting, yet difficult to describe, sensations also occur because of spasticity. I cannot describe them, but the result for me is feeling like removing the offending appendages to make it stop. Let us not forget the fatigue factor. Imagine yourself doing a full cardio workout and how tired you become afterwards because when the muscles are doing their own contracting and not releasing, this is essentially what is happening all day long.
Until the dose gets higher, these are some of the symptoms that I again have been dealing with and for me this time, it will likely be temporary. For nearly four years before the first pump, I did not have the luxury of knowing it was temporary. Before this, I had a basic appreciation for my survival and coping skills. I certainly had an appreciation for the pump and how it allowed me to more fully live my life.
Now, for the first time in eight years, I am actually in awe and admire myself more than ever for those first four years, and I am even more grateful for how effective the baclofen pump has been at managing my symptoms for the last four.