Pain Management and Another EMG

My husband brought me home from my parents’ house on September 4th. My two months away was at an end, and I was home again, trying to keep my routine, do my Gupta Program, and not think about mold.

On September 6th, I had two doctor’s appointments in the big city. So once again, my husband “worked from home” in waiting rooms. 

First, I had an x-ray of my lumbar spine again. This was ordered by the sports medicine doctor. He referred me to Pain Management after the injections didn’t work and the EMG on my legs was normal. (Which feels to me an awful lot like, “If injections don’t work and you don’t have a pinched nerve, I have no idea what else to do with you. Next.”)

At my pain management appointment, I had to fill out a LOT of forms, including ones about whether or not I was a drug seeker. I filled in the little person diagram showing where my pain is. Do they even look at any of that? 

I saw a young woman doctor, who was doing her fellowship, and who would report back to the doctor who was certified in anesthesiology/pain medicine. I told her my whole history, and I feel that she could learn to be a little more tactful and gentle. She pushed me to strengthen my core and stop wearing my lumbar support brace so that I’m not dependent on it forever. I agree with everything she said. But of course she does not fully understand what her patients are going through. It’s not like I’ve never tried to strengthen my core. 

Eventually she picked up a model of some vertebrae and explained what radiofrequency ablation is. I think. This is what the sports medicine doctor thought the next step might be. I’d have to come in three times for different parts of the procedure. They burn nerves in the spine, which stops them from sending pain signals to the brain. I mean, sure, stopping the pain signals sounds really good. But it also sounds a little ridiculous. “We can’t help you with your back, but we do know how to destroy some nerves so you don’t feel the pain anymore, but everything that’s going on in there is still going on and progressing. Also, you’ll have to come back once a year because the nerves grow back.” Yikes. Is it worth it? My pain doesn’t hurt that bad, does it? It’s just that it’s always there. So maybe ablating the nerves is exactly what I need.

She left and talked to the doctor. By this time, we’d been talking so long I was afraid that I’d have barely any time with the specialist himself. 

When they came back in together, the specialist introduced himself and said something like, “We’ve been talking and really trying to figure out what would work best, kinda throwing everything out there and seeing what sticks. And I really debated whether to even bring this up. I really debated it, but I want to ask if anyone’s ever suggested a baclofen pump.”

I was definitely not expecting that. I told him no, and I wondered why he went straight to the pump (which is surgically placed inside your body) when there’s oral baclofen. He said oral baclofen isn’t as effective. His thought process was that while there are drawbacks to the pump, maybe because my spasticity isn’t so profound, I’d need less medication for a bigger return. The first step to figuring out whether to get the pump placed is to have an injection into your spine to see if it works for you. Not wild about that either. So, I’m not ready to go that route, but I’d look over more information about it.

What else? Besides those two rather invasive options, there were also compounding cream (out of pocket, $100 a tube; I’m not optimistic that it would do anything), and CBDa. I’ve tried loads of different CBDs, but not this one, and of course it’s supposed to be stronger and better and etcetera. Maybe I’ll give that one a shot. 

And then there’s Cymbalta (duloxetine). I’m trying gabapentin now, and I’m still on such a low dose that I don’t notice anything. I guess we’ll work our way up to the max dose before we decide it does or doesn’t work. I’m not really comfortable with starting a new medication while also increasing the dose on an existing one, because then how do we know which one is doing something? This doctor is fine with me being on both medicines together and seems to really like duloxetine; it works differently than gabapentin, which targets nerves. This doctor thinks that my pain is more muscular, which makes sense, based on the injections that haven’t worked so far. Sigh. I don’t know. His job was to give me all the options and send me back to my primary care doctor to make the decisions. I did also come away with a referral to pool therapy. Sounds nice, sure, but logistically, there aren’t many options.

After that my husband and I had enough time to go have lunch before returning to the hospital for the EMG on my arms. 

I was much calmer this time because I knew what to expect (and because I’d been doing SO MUCH meditation over the last couple of months). And because I’m able to actually relax or contract muscles in my arms and hands when asked. Which is a big plus. Well, I’m able to relax the muscles when they aren’t under extreme duress. It’s possible that this one was more painful than the leg one. Needles going into my hands seem to have trouble. Like they’ve really got to dig. Ugh. Lots of attempted deep breathing. My hands still ached for an hour or two afterward.

It’s kinda rough to go through all that just to be told that everything looks good. I’m glad it looks good though. It’s what I expected. But now what? The doctor who performed the EMG suggested an MRI on my neck and other possible tests. But I don’t want to keep doing these time-consuming, expensive, small t traumatic procedures just to be told everything looks good. 

I just had a followup with my primary care doctor today and we discussed these two appointments. She followed my lead on not moving forward with the neck MRI, and not starting duloxetine until we figure out the gabapentin. Now, the pain specialist really thought the duloxetine had a good chance of working better than the gabapentin. And the real reason I don’t want to take it (which my doctor knows) is that it only comes in a gelatin capsule and I don’t eat gelatin. I understand that gelatin capsules are cheaper than non-animal capsules, but that excludes several populations. Not that drug companies care about people’s religious guidelines, dietary preferences, or moral imperatives, I know. The skins and bones of others are not for me. Will I end up making the choice to consume the skins and bones of others every single day? For now, I’m stepping up the gabapentin.

Transitioning back home hasn’t been easy. I am still not working outside the house. I have not gone back to the school district, so my days are still wide open. And yet, I’m finding it difficult to fully do the Gupta Program, to do my 7-Step rounds as much as the program advises me to be doing them, to do the meditations during the day instead of falling asleep to them at night, to watch the videos and really take in the material. To make a daily practice of it all. To focus on anything. It’s a struggle. 

Trees and trees and EMGs

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.

Nature Trail, Quinault
Hall of Mosses, Hoh Rainforest
Look at that blue water. Seriously, it looks like I’ve been green screened. At Staircase.
These pink foxgloves were everywhere
“Big Cedar,” Kalaloch
Douglas fir

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.