Month: August 2021

August 9th

Somehow, summer is almost gone. I have continued PT and some myofascial release, and I have spent lots of time resting and reading (and, let’s be honest, wasting time online). After postponing my June trip to the Hanger Clinic, I’d entertained the idea of going in August, but that’s not happening.

Week after week I went to PT without much change. But I’ve realized it’s not as bad as it was in the beginning because I can stand and chop vegetables now without needing to rest immediately. Somehow, I’ve incorporated this new pain into my life like all the others, and it’s mostly fine. Fine and simultaneously completely dysfunctional. My physical therapist encouraged me to have the arthrogram-MRI done so that I could have a consultation with an orthopedic surgeon and get their opinion regarding surgical repair. Another option is having injections into the hip for pain. That sounds awful, but better than surgery, if it’s effective, maybe…?

I was able to schedule the procedure for June 24th. I had assumed they’d be booked for weeks, but I knew it was good to get it done and move forward with treatment.

It felt weird, with my husband back in the office four days a week, to take the bus and go to the hospital alone. After my first MRI in May, I never wanted to have another, and there I was just six weeks later, doing it again. 

But first, the arthrogram. I had to undress from the waist down and put on a giant gown and climb up on a table and get my feet bound together in the optimum position. It was only after my hip was bared and I was lying there pantsless that the doctor came in and explained the procedure and the risks (infection) and got my consent. Does anyone climb off the table and say no thanks, never mind, at that point?

I was very nervous, anxiety running high. When the doctor asked how I was doing, I told him, and he chuckled. They sterilized the area with cold purple stuff, put down the blue paper with a hole in it over my right hip joint. He pointed to where the injection would be and my whole right leg spasmed. 

“I haven’t even done anything yet,” he said. 

“I know, but–spasticity,” I answered.

The first injection was just lidocaine to numb the area. I’ll not rehash everything, but it did hurt, and I got extra lidocaine (Did you know they charge you for each dose?), and I didn’t look at the giant needle when the dye was going in. I remember, I think, that the doctor remarked about having to go around some bone. And I remember that he didn’t say anything to me before he left.

The woman assisting very nicely helped me off the table and back to the bathroom where my clothes and walking poles were. She said I could change or keep the gown on for the upcoming MRI, but that I’d be given a gown when I got there. Of course I said I’d keep the gown on, and she gave me another to cover the open back before escorting me to the MRI room. What a strange feeling, walking through the halls of a hospital in a gown, no pants, just like on TV. Stranger still to step outside, walk down a path, and enter the neighboring building.

This time, it wasn’t Jasper by himself at night in an empty hospital, but a whole different team of people who greeted me with smiles and grumbled that the previous people hadn’t already had me fill out the metal-object questionnaire. Time was of the essence with dye coursing through my hip. 

I requested the headphones at the very start. I knew I would be going feet first into the tube, that the top of my head would stick out, and that I would have only one MRI instead of two back to back, this time. I knew my feet would be bound together, and I knew I’d have equipment on my legs, weighting me down. I knew I’d get through it. The tech was encouraging and kept up communication throughout the process, and I was grateful. 

I counted the tiny holes in the small circle of plastic on the top of the MRI tube right above my face. I counted the nine holes over and over again in different patterns, exes and pie pieces and lines. I counted the scuff marks. I breathed and I survived. 

When I was helped down off the slidy bed, I realized how sore my hip was, how I could barely walk. I got my clothes back on, my glasses and mask and sunhat and purse and poles. I slowly made my way out of the building, through parking lots, down the road, and to the bus stop. I was not prepared for the pain and stiffness and inability to move. But luckily, the bus arrived within minutes and took me almost to my front door. So grateful for that. 

No one had warned me that recovery from an arthrogram could be painful. No one warned me that there would be any recovery. It turns out that having a giant needle put deep into your hip and then immediately holding as still as you can for a half hour can cause some lasting pain. It took about a week, I think, for the pain to subside to normal levels.

Results came back very quickly. I have a small anterosuperior labral tear and “mild osseous hypertrophy along the anterolateral femoral head-neck junction with decreased offset. Correlate with symptoms of femoroacetabular impingement [FAI].” Following some googling, I discovered that impingement commonly results in a labral tear. Lots of people have this condition. This condition that causes hip pain and dysfunction. Able-bodied people. It’s a little funny, right? All this time that I’ve been thinking that my right side hurts so much because of a lifetime of compensating for the left side. All this time I’ve been thinking, “Wow, I didn’t expect aging with cerebral palsy to be so far downhill so quickly.” And I have a condition that’s not even CP-related! Knowing that there’s a diagnosable, visible reason for pain is really nice, mentally. 

Now, I imagine it’s possible that my CP might have contributed to the FAI in some way, which then led to the labral tear. Looking back, I think the aggressive stretching I was doing in PT might not have been a good idea, as the tear happened following that. Perhaps, I was unknowingly pushing my body too far.

But both labral tears and FAI can be surgically repaired with good results. In fact, if you fix a labral tear and don’t address the impingement, you’re likely to tear again. (I’ve read an article or two about it, so now I’m an expert.) However, there is a need for revision in a portion of the population, and revision is significantly higher for females. Hmmm. Of course, I didn’t want surgery. But surgical outcomes are better than PT alone. The prospect that, after a long recovery (and like a year or more of working up to full results), I might actually be in less pain and more functional–that my life doesn’t have to be this hard? That’s an amazing idea.

Before I jump ahead to surgery though, I need to remember that my diagnosis is a “small” tear and “mild” FAI. I imagine that diagnosis, along with my pre-existing condition would make me not a good candidate for surgery. So I have to be prepared for that. Part of me would be relieved to be told no surgery. But the other part of me really wants to know what my hip could feel like after it’s repaired.

August 18th

I’ve returned from today’s appointment with the orthopedic surgeon. The appointment was 40 minutes away, and I’m so glad my husband was able to take off work and come with me. 

After we were led to our room, they came back and said I was supposed to have had x-rays, which I’d had no idea about. For a moment, I thought I was going to have to reschedule my appointment. Thankfully, imaging was on the same floor and I was able to go right in. X-rays took just a few minutes and we went back to our room that had a giant, adjustable, multi-part chair rather than a table. 

The doctor pulled up the x-ray images and we could see the difference in my hip bones. My left hip is a typically shaped ball and socket. My right hip has “a very deep socket,” so that the head of the femur is hitting bone as it moves (This is the impingement, FAI). Isn’t that something? The shape of the bone itself is causing pain. Not cerebral palsy. I mean, sure, my left hip, the typical one, doesn’t always feel fabulous, but compared to the right, it’s like a 1 on the pain scale.

The impingement has been there at least since I’ve had my adult-sized body, which is just about when chronic pain and fatigue began. Common with CP, yes. I know that I’ll still have CP-related pain. But this labral tear and this FAI can be fixed. It’s a straight-forward, arthroscopic procedure. This doctor has done around six hundred, he said.

“Ever on someone with CP?” I asked.

“Nope.”

He doesn’t anticipate that there would be any problem. There is a slight chance that because of my increased tone and prior surgery in the area, he wouldn’t be able to get at what he needs to reach arthroscopically. (He might not be able to “distract” my hip.) He thinks it would be fine, as the muscle tone is coming from the brain and once I’m under anesthesia, there shouldn’t be increased tone. But there’s a small chance that he’d start the surgery and then have to stop. He could refer me to a (pediatric) orthopedic surgeon who does both the arthroscopic and open techniques, so that if arthroscopic didn’t work, he could open and do it that way. Just hearing “open,” makes my stomach sink. (More pain, longer recovery, etc.)

I think this doctor does have a good understanding of cerebral palsy. But it was still weird. You know, I start on my whole spiel, the history, the major 4-in-1 type surgery at eight, a mention of the ExoSyms, which he’s not heard of. He’s typing away. Then he comes over and moves my left leg this way and that. Moves my right leg this way and that to compare. I try to hold my leg up into his hand. That’s the whole of his physical assessment. I know he can get a lot of information out of that, and a lot out of all the images. Still, he doesn’t know me, hasn’t seen me move. He doesn’t know my abilities or capacity, what I was like two years ago compared to today. How I have literally almost no balance. And he talks about recovery time: in six weeks, I should be walking around like before. Right. Mentally, I double that, at least. He talks about being on crutches. Yeah. Mentally, I change that to wheelchair and walker. He may have noticed my eyes widen above my mask, because he did amend that perhaps my recovery may be a little different. I would have liked for him to watch my videos, pre- and during ExoSym time. I didn’t feel rushed, but I didn’t go into all that, either.

There isn’t any literature to be found on cerebral palsy and FAI. He said more than once that I was rare. But what I kept thinking is this: Cerebral palsy is a very common disability. FAI with labral tear is a very common condition as well. I’m guessing the middle of the Venn diagram is bigger than he thinks. Hip pain is such a common condition with CP, that I think many assume, as I did, that the pain must be CP related. How many of us are out there living with multiple painful conditions, when one, at least, is treatable? I know of a couple people with CP, actually, who were not candidates for surgery because of their CP. So–I was a little surprised at there only being slight hesitation on this doctor’s part. Maybe it was because my CP is mild and I seem healthy overall. 

The surgeon that he could refer me to works with children with CP, so he’s more familiar with it, at least. I was pretty ready to say, “Sounds good; let’s do it.” The possibility of less pain is enough enticement to go ahead.

But I so, so dread the recovery. My only two experiences with surgery were to go in with no pain and come out with lots, and months and months of pain to follow. Logically, I know this procedure is different. I also know there will be pain and swelling, and I’m in such a bad state right now that I don’t know how I’ll be able to handle it. (I’m referring in part to the pain in my thumbs/hands/forearms, parts of my body that I’ll need to rely on in order to function.) 

The other option discussed was to get injections in my hip, for pain. The procedure, he said, was similar to the arthrogram, when I had the dye injected. He said this like it was no big deal, and I let him know that it was really unpleasant, actually. I’m willing to try one, see if it helps/how long it lasts. (Could be six weeks; could be a year, apparently.) But getting injections for pain isn’t going to help the shape of my bones. Further, the older I get, the harder the recovery from surgery will be.

So. Surgery is in my future, I think. But not too soon. I’ve got to prepare, mentally and physically. Prepare my home environment. I’m already looking at toilet safety rails, shower chairs, and walkers with seats.

The doctor says in the meantime to keep up with my stretching and activity, that I won’t make the tear worse. (It seems like that’s possible, no?) Little does he know how little stretching and activity I’ve actually been doing. I like how he gave me so much credit for daily stretching. (I did not correct him.) There was a time not so long ago that I was keeping up with it.

I also need time to address the other side of my health, and I am looking into mold testing for the house and detoxing for me and trying to find reputable sources. How lovely it would be if I could feel awake again. If I could have a throat without pain again. These processes can take so much time. I feel like I need to be as strong and healthy as I can be before tackling surgery and recovery, but I also don’t want to wait months or years.

Now, a nap.