*disclaimer: this post is not meant to be taken as medical advice. Consult your doctor before changing care-plans. I hope my story will shed light on unforeseen consequences of living with CMT. Hopefully I can help spread awareness... Time since injury: 4 weeks, 3 days Doctor visits: 6 Casts and splints: 4 Diagnosis: Bad sprain
Last Tuesday I got the good news that the MRI showed a simple (still bad) sprain. I had my cool new blue cast. I was optimistic and ready to move forward. It was the first week of school. I met children that didn't care about my wheelchair. If anything, they thought it was cool. Ready, set ...
Yikes. The dreams ended that night. Haha. The very first night I was awakened by fiery pain in my toes. This cool new blue cast covers three-quarters of my foot. Everything above it was very angry. My toes became increasingly swollen. The next day, I called the doctor to hear that he was in surgery. I could go to the emergency room. Or take more medicine. But I'd be fine. The swelling would go down.
Wrong. The second night was worse than the first. I rallied for my new class. They are bright, fun, happy kids. My foot would start looking better. I was turning the corner, right?
Wrong again. The third day was excruciating. The doctor saw me right away. He guessed this might happen. He had stretched my tight tendons and he thought my foot might spasm. He had been concerned. That might have been useful informantion for me.
They sliced up both sides of the cast and the pressure was immediately relieved. Thank goodness. I breathed a huge sigh of relief. Finally. The corner.
Into a deep painful night. Again. What the heck?
Here is where CMT becomes my nightmare. When I was thirteen, doctors said I should get surgery for my tight tendons and high arches. I opted out. No thank you. I'd deal with my Barbie-doll feet when they became a problem. And then life kept me busy and I figured out solutions.
My best way to explain is that each night, my body acts like I go into a coma. The tendons in my legs tighten. And every morning I stretch so my heels touch the ground again. This is my normal. It doesn't bother me.
Until I have a rigid cast that ends right under the ball of my foot. And at night, the tendons tighten, and my toes push. And nerves get trapped between bone and fiberglass cast. Thus, fiery pain. My foot pushes as hard as it possibly can despite my best efforts. The old casts, the splints, extended along the length of my foot so the pressure was evenly distributed. They didn't bother me. This, this is a disaster.
By Saturday, I was frayed and lost. Done. Ready for the emergency room. Ready to rip it off with my bare hands. Another night wrestling with pain and insomnia. I couldn't take it. My husband pointed out that the emergency room would simply replace one cast with another. Solving nothing.
So we called our connections in the medical field and found that we could loosen it at night, then secure it during the day with ace bandages. Sleep, beautiful sleep. And the tendons tighten up overnight. But I know the difference between stretching my usual tendons and stressing the healing tendons, so I gradually stretch it in the morning and put the cast pieces back on with ace bandages. It's not pretty. It's not blue. But I sleep. And that's all I care about.
I accidentally find another time when CMT plays a major role in healing. See, it's starting even now, the burning, pushing pressure. The best explanation is to stand on a block of wood, to let the edge of that wood press into your skin. For hours. And you can't pull away. You only press harder. Not a comfortable idea. Oh, and your muscles are weak, so your nerves are right under your skin. Trapped between the block of wood and your bones. And you cannot, no matter how hard you try, step off the wood.
I even stumped the internet, as far as I can tell. I found information about tight casts, but nothing about CMT and cast complications. Yet again, the typical story is not my story. *sigh*
Meanwhile, the kids started school. I even get my niece in my class this year!
And we have a big adventure tomorrow. I better get some rest. Loosen this cast.
Wishing you sunshine and cool breezes (and a good night's sleep!) :)