Last year, I had scheduled additional training days at the Hanger Clinic in Gig Harbor, Washington. Then I injured my groin and started down the road of MRIs and new doctors and injections, not even wearing my ExoSyms. We did not go back to Gig Harbor in 2021, nor did we visit the Olympic Peninsula as we had planned.
Since we were already going to be in the Pacific Northwest this year, we decided we’d finally visit the Olympic National Forest and Park (hard to tell where one stops and the other starts).
We spent two days in Union and two days in Quinault, with a stop at an “easy” trail in the Hoh Rainforest. It was an easy trail, but parts were challenging for me. If there’s a tricky (rooty and rocky) incline, I start to get very nervous about having to face it coming down. (Usually, if the trail is a loop, I do not complete the full loop). With my back more painful and overall just feeling in decline, I did not feel excitement at the challenge, nor triumph at completing difficult sections of trail that I did that first time I hiked with the triple support of good shoes/lumbar brace/trekking poles. It’s hard to enjoy the scenery when you’re concentrating on placing poles and feet safely. Additionally, some trails we did were popular, with lots of people squeezing by each other. I just felt tired and glad to be done. I’m sure I wasn’t the most enjoyable companion for the physically challenging parts of our adventure. Once, I waited on the trail while my husband went farther. Another time, I read in the car after we did an easy trail and my husband chose another trail to explore for a bit. Reading in the car while my loved one was free to go where he wanted at the pace he wanted felt really nice to me, and familiar. Almost comforting.
Here are a few rather spectacular nature photos from various locations. I’m not madly in love with moss, and there was sure a lot of it.
I discovered that many hiking trails in a temperate rainforest are graveled. Sometimes the gravel is packed into the mud until it’s barely visible. Sometimes it’s on top of the mud. One trail even had raised beds of gravel with gaps in between. Gravel is often loose and slippery, and not the best medium for poles. Crunchy, not quiet. I hadn’t known what I would think of the rainforest. While I learned that it’s often breathtakingly beautiful and I very much enjoyed the visit, in the end I concluded that it does not make my heart sing and fill my lungs and my soul the way the redwood forests do.
One of the things I most love about being among the trees is that I am reminded that humans have not yet destroyed everything. On this adventure, I saw trees that were many hundreds of years old, even a Sitka spruce estimated to be 1,000 years old. Douglas fir so gigantic they bore no resemblance to the trees we bring inside our homes in December. Mountains and mountains full of trees and trees and trees. For that, I am grateful.
As our road trip drew to a close, my EMG appointment loomed. I had done well not worrying about it. Many weeks before, I had asked in the cerebral palsy Facebook group about people’s experiences. They ranged from “uncomfortable” to “crying the whole time.” Rationally, I understood that I would make it through it regardless, and that I had no way of knowing how I was going to respond, so there was no point in being anxious about it.
I only started to feel a tight, twisty stomach this morning as I was getting ready to leave. I think that’s pretty good. At the appointment, my husband “worked from home” in the waiting room, and I went in alone.
The doctor, Dr. J, was there with her resident, Dr. H. The resident looked like a very young woman to me, and I realized I’m now old enough to think and not say things like, “Are you sure you’re old enough to be a doctor?” They asked me to explain why I was there, and then the resident did the strength exam. Well, first they thought they were doing arms today, and I explained that the leg one was ordered first and that the arm one was an attempted add-on. Dr. J had to scroll through and find the order for my legs, and I briefly wondered whether there was going to be a problem. No, it was fine–they would do legs today, but I would have to schedule my arm appointment for another time.
Dr. H did the whole procedure, with Dr. J overseeing/coaching and sitting at the monitor. After the strength testing, Dr. H pulled a giant safety pin out of a bag of safety pins and then proceeded to prick me with it in various places, ever so slightly, to ascertain whether I had normal sensation in my legs I think. I could really barely feel it–that’s how little the end of the pin touched my skin. Then it went into the sharps container. What a waste of a brand new safety pin.
After that, the nerve conduction study began, with my right leg. For this, electrodes were stuck around my ankle/foot area. Then they administered little shocks, starting low and gaining in intensity. Dr. J told me they would become strong enough that my foot would jump. At any point I could say stop, and they would stop. I mean, that sounds pretty daunting.
It was mostly okay. At the beginning, when the shock was becoming uncomfortable, I asked, “Are we still at a low one?” And Dr. J answered, “Yes,” quite emphatically. Geez, how strong was it going to get? I really appreciated when they let me know the shock was coming, which was only on a few of them. When they moved up to my calf, that was one painful. Then Dr. J said, “We’re going to do this nine times.” Ack. And then she counted them for me. The unsettling thing was that even when they were over, the sensation lingered a little.
Next it was time for the “needle test.” The Mayo Clinic tells us, “Electromyography (EMG) is a diagnostic procedure to assess the health of muscles and the nerve cells that control them (motor neurons). EMG results can reveal nerve dysfunction, muscle dysfunction or problems with nerve-to-muscle signal transmission. During a needle EMG, a needle electrode inserted directly into a muscle records the electrical activity in that muscle.”
They would first measure the muscle activity at rest and then might ask me to do something. I asked what if I couldn’t do what they needed me to. Dr. J assured me that they’d get the information they needed. Though she hadn’t done very many of these on patients with CP, she’d done some. And after the nerve conduction study, she had a very good understanding of my spasticity and the way I would probably react to stimuli. She said something along the lines of my nerves were pretty reactive so it’s possible that I’m more sensitive to pain. And then, “Again, you’re in charge and can tell us to stop at any time. We don’t want this to be a horrible experience for you.” Yikes, right?
Thankfully, I generally have no problem with needles. And these were very small and not very painful going in. Though I did notice they were more painful the further along in the process we got, and Dr. J did say later–explaining to Dr. H why they weren’t going to do anything more–”People become more sensitized to the needle, and then it’s more painful and she’ll continue to have a spastic response.”
They started with the right leg because that’s the more symptomatic side. I lay on my back on the table. Being prone and not being able to see what was going on (but looking away when I needed to) is not a feeling I like. Too vulnerable and too much anticipation/fear of the unknown. Dr. H was great at consistently warning/preparing me: “Poke on three. One, two, three, poke.” And the needle went in as she said poke, but she said it like it was routine and no big deal, not like she was grimacing for me. Again they started down around the ankle, and I had to try to stay relaxed of course, relax my foot. I was able to do this in the beginning–go me. Maybe meditation and breathing is helping? Or maybe the gabapentin? Oh, also, I was really glad I didn’t need to undress. I wore comfortable shorts and a t-shirt and just had to remove shoes, socks, and lumbar brace.
Dr. J continually talked to Dr. H (as she was placing and then moving the needle) and looked at the screen to make sure they were getting the information they needed. She gave me lots of “Good job” comments (Sometimes, “Deep breath.”) and said, “Beautiful!” a lot when a good wavy line must have shown up on screen. Mostly it was uncomfortable and occasionally painful. Like, Uncomfortable. Pain now! That hurts! and then it was over, but still linger-y. I kept wondering if the needle was out yet. It was.
I had to turn onto my left side a couple times. Everything that was done to the leg stayed below the knee. Then I spent quite a bit of time on my stomach with pillows under my hips and they did several placements on the low back area. Dr. J was advising Dr. H to find a particular spot and then go four finger widths, and I’m like, “People’s fingers are different widths!” But apparently, that’s still what they say and the student-doctor is still supposed to find the correct placement. Dr. H did have to take out a needle and place it in a new spot a few times throughout the whole proess. Dr. J: “That’s one finger width. It should be two.” One time she said, “Leave the needle in and take a step back.” I don’t know if she meant for Dr. H to reassess or literally step back and let Dr. J intervene. (I was lying with my face toward the wall.) I think she did step in once or twice. Dr. J did also come over and show her how to press on a muscle and then do something with the needle.
One thing I really had trouble with was flexing my ankle (bringing toes toward me) but relaxing my foot? I think? I was asked to curl the toes and still flex the ankle. Nope. The only way to bring my foot toward me is to use my toes. I’m not sure whether they had any real trouble getting what they needed. They were definitely staying upbeat and coming up with alternative ways easily. They continued to make me feel like I was handling things well.
Then they did something on my left side and I was surprised. I had been thinking that they were going to eventually start the whole process again on the left leg, starting with the shocks. Dr. J didn’t feel that was necessary because most of my symptoms are on the right. At the end, they did something really painful that made everything spasm and then I couldn’t relax again, deep breathing and all. Dr. J said they’d gotten everything. But I don’t know if they would have continued with other locations, or if my spastic response had put an end to their data gathering.
I was surprised and relieved to be done, expecting as I was to go through it all again on the left side.
Dr. J told me that my nerves are “normal,” and everything looked good, no evidence of a pinched nerve. So that’s good news. She thinks that my issue is my joints (the hip impingement), my biomechanics (CP). Sometimes physical therapy doesn’t work. Sometimes injections don’t work.
I’d briefly gone over the history/treatment of the labral tear and impingement in the beginning, and now I told her, “Well, I’d had an orthopedic surgeon who was willing to do arthroscopic surgery, but had never done it on someone with CP and referred me to someone at UCD who could do both arthroscopic and open in case I needed open. Then my referral was denied.” Dr. J mentioned a different UCD doctor who did hip surgeries on complex patients. Now that I’m a UCD patient, maybe I’ll get that guy.
Dr. H showed me out. I wanted to tell her, “Thank you for becoming a doctor. We need young women doctors like you. Good job learning this complicated and rather scary procedure and keeping yourself together when you made mistakes.” I hope she did. I hope she didn’t go and ruminate like I would have. I did not say those things, though. In the end, I was so relieved–I did it! It’s over!–that all I did was go find my husband and go home.
Now I’m supposed to have a followup with my sports medicine doctor, the one who ordered the test when the second steroid injection did nothing. He’ll say everything looks good. We’re back to looking at hip surgery, I think. Exactly where we were nine months ago. Ah ha ha ha. Wah.
What Happened to Your Legs? 