In preparing for my relatively minor outpatient surgery totally unrelated to my illness, my doctor and I realized that my PLS symptoms could pose a problem.
Since most of my surgeries in the past decade have been pump related, it never occurred to me that the clonus might cause problems because of the position I will have to be in for this procedure.
My knees will have to be bent and that position has to be stationary for the duration of the operation or something could go awry. I can sit with my knees bent but there is often subtle movement, and my legs will be raised for the surgery.
To add to that, I also have to be under general anesthesia, so the jaw clonus will be an issue with the intubation.
My doctor was great at my pre-op appointment. She asked me to show her all the things that make the clonus continuous and asked me for suggestions to manage that while I am out.
I showed her everything I could think of; short of hitting myself with that awful reflex hammer thing. I suggested making sure my bent knees were resting on something and not just higher and bent without any support.
Tomorrow as they prepare me for surgery, I will talk with the anesthesiologist about the jaw stuff and let him know that he might need to give me more muscle relaxants than the average patient just to be safe.
All of that said, it would have never occurred to me to talk about my neurological stuff with my gynecologist. I have spent all of my doctor time the past 11 years primarily on the neurological issues, so I never tended to the rest of my body so much. Fortunately, she had the foresight to ask.
I had some moments this week of sadness about it all. There really isn’t any part of my life that isn’t affected somehow, and some weeks seem to highlight that more than others. I have had two weeks in a row that have seriously put it in the forefront of my world.
I am not going to lie, it hasn’t been fun for me to stare it down like this two weeks in a row. It has me really thinking more about things I can do to manage my illness, and to better manage how the symptoms affect my life.
It hasn’t stopped me from being present enough to enjoy the beautiful weather, the company of my old dog buddies and having some fun out and about. There have been enough lighter moments to soften it all enough to keep moving forward.