My first trip to the Hanger Clinic is coming soon. I will be casted on day one, and try out mock-ups, or “test devices” on day two. My last post included a list of actions or activities I used to be able to do. Now, let’s take a quick body scan and assess some chronic pain, shall we? Listening to someone’s aches and pains is not interesting. I know that. This catalogue is so I have my own “before.”
Feet: my left big toe started to send me sharp pain somewhere around…two?…years ago. About a year ago, I realized I was unable to step on it walking barefoot on my laminate flooring. This year, I went to my first podiatrist. He told me to wear stiff-soled shoes and thick, soft insoles. And don’t walk barefoot. I do not walk heel-toe; rather, my whole foot comes down at once, mostly on the big toe. So, I’m grinding the bottom of my toe into the ground with every step. After 38 years, I guess it’s had enough.
Ankles: these are mostly fine, unless I walk too much at once. Hooray!
Knees: One or the other of these aches often. The right started clicking and aching in June 2014, and the left followed in July. A doctor told me to ice them, twenty minutes on, twenty minutes off. What, forever? When I got referred to PT, I asked the therapist if some kind of knee support would help. She had me stand up and put her hands firmly around my knee. “Does that help?” she asked. I almost laughed. You mean if a knee support were going to help me, the pain would lessen right now? Just from that?
Hips and legs: Hips are always very tight. Sometimes I have strong, almost burning, pain in my right IT band. Other times an inner quad might hurt. Often, my right SI joint will give me sharp pain. It changes day to day, sometimes hour to hour. Sometimes I know what set it off; usually I don’t. I know I should avoid twisting while standing. Trying to do anything while bent over, wiping up a spill on the floor for example, is a really bad idea unless I take the strain off my hips and legs by holding onto something.
Back: I do not think of myself as having back pain. But sometimes at the close of a long walk, there is a pain and stiffness in my lower back that makes it hard to breathe. I stagger to a seated position and bend over my lap. A few cracks and a deep breath and I can straighten up again. I realized the other day that I “don’t have back pain” because I can make it go away. Apparently, I only count chronic pain as real pain.
Trapezius: If you’ve never looked at an image of the trapezius, check it out. It’s a giant muscle from the base of the skull, out to the shoulders, tapering to the middle spine. Since 2016, my neck and shoulders have been painfully tight. I know I have terrible posture. Telling me to sit up straight isn’t helpful. It takes a tremendous amount of energy to maintain good posture. Certainly while walking, it’s nearly impossible for me. Is PT helping? Can’t say for sure.
Jaw and ear: Yes, my jaw and ear hurt sometimes, just the right ones. It’s all connected. I think the constant neck tension is pulling my jaw and ear out of alignment. The years of extra strain on my stronger right side as it compensates for the left is taking its toll. If you’ve never had sharp, intense pain in your ear, be grateful.
This is the state of things. Pain from head to toe. Perhaps not all directly related to cerebral palsy, but definitely indirectly affected by it. I have tried many modalities to address the issues.
The ExoSym is life-changing. All the people in the videos say so. But what about all the people who aren’t in videos? How many try out the test device and decide not to move forward? Maybe it won’t be life-changing for me. Maybe I’ll still have chronic pain and very limited balance. It won’t do a thing for my muscle spasticity. It won’t make cerebral palsy disappear. The people who put on the test device and are “pain free” right then and there are usually people who were able-bodied before having some kind of foot or ankle injury.
My pain comes from a lifetime of atypical body mechanics. It’s going to be a different kind of experience for me. How can an hour or two in the test devices show me how they might affect my body long-term? I don’t expect any of my chronic pain to be immediately relieved. I’ve never felt an immediate improvement in anything physical in my life. Never have I been able to report back to a doctor or therapist, “Yes, _______ definitely helps.”
So what will the ExoSym do for me? What is a realistic hope? I hope that I feel lighter, that I can feel the “energy return” that the brace is designed to provide.
I hope that I feel something. That I can tell the devices are doing something.
What Happened to Your Legs? 