My surgery for GCT happened in December of 2017. It’s officially been over a year.
The knee/leg remains problematic. There’s still a significant dead spot due to nerve damage. It’s still prone to becoming sore and tender, and hasn’t the range of movement of its counterpart. It still doesn’t feel normal, like it used to. It doesn’t feel completely right. At this point, a year on, I wonder if this is the new normal. If you’ve read my previous posts, this isn’t news to you.
Over the holidays I spent a couple of weeks helping the in-laws prepare their house for sale, doing frankly quite a bit more manual labor in successive days than I have since the surgery. The area on the outside of my knee, the around the LCL, became painfully sore. This frightened me, because this is the pain I had started experiencing prior to my tumor diagnosis. Weird, since the tumor is on the inside of my leg, but perhaps the irritation came from unconscious favoring or compensating. At any rate, I opted to take a few days and chill on the labor. The pain subsided, but then I went for a mountain bike ride. By the time I’d returned from it the pain was sufficient to effect my walking. My limp was back. That was over a week ago, and while I’m not limping regularly now, it’s still tender. I’m not going down the stairs evenly as I was. Sitting still for any length of time causes it to stiffen up. To be fair, it’s quite cold here now, and that may be contributing to the stiffness.
The good news is that I was also due for another x-ray (for now, these happen every 4 months). Every trip to get an x-ray is an adventure. I live in a small-ish city, where there was no one to treat my GCT, so I flew out of state for the surgery. As such, every x-ray I get here I have to send to my surgical team for review. The orthopedists office that diagnosed me does my x-rays, but every time is a new set of challenges. Somehow despite having a chart full of my past appointments, every visit feels like the first visit. People don’t realize I’m not there for a ‘condition’ they’re treating, but simply an x-ray. I wind up in a waiting room, forced into a discussion about how my knee’s doing (You’re a perfectly nice person, but this discussion’s unnecessary – I’m here for a scheduled x-ray, that’s it). People don’t realize that I need a copy of it to mail off and give me heat about that every time. Being an ortho, they don’t understand that I need an annual chest x-ray, and that the doc there who diagnosed me has OKed this procedure despite them having no expertise in such things.
I digress. This visit was no different – it took over an hour for 2 minutes worth of x-rays, and everyone but the doc seemed as clueless about it all as they have for the last 5 visits. On the upside, the doc took a peek at the results and doesn’t think he sees any change. This is a nice to hear, but the real relief comes from hearing the same for my surgical team. This won’t happen until at least this Friday. Fingers crossed – then I can get back to trying to get my arms around this recurrence of soreness. I’m wondering if I need to go back to the gym to do more PT exercises. It does seem – and maybe this is age related – like if I’m not regularly working it out and putting it through the motions that it regresses.
Coincidentally there was a recent post on one of the Facebook support pages from the wife of a man having a very frustrating time with his GCT recovery. Apparently he had been told that, since he was an otherwise healthy and active 30 something year old, he didn’t need physical therapy. The result was that over a year later he was still struggling with even trusting his knee to keep him standing. No PT seems crazy to me, for anyone at any age or activity level. I’ve done extensive PT and I’m still recovering. Granted, I’m a decade (or two) older than the aforementioned person, but still – I was a cyclist and runner and fairly well fit before beginning this journey. And even with the PT I’ve done I can tell that I haven’t focused enough on building up its flexibility and mobility. I can pedal a bike, but I sure don’t trust it to, say, trail run (or run at all). Side to side stuff still feels sketchy.
I replied to the post, saying that I definitely felt they’d been misinformed and he should start PT immediately. She replied that at this point he’s so dejected and beaten that she wasn’t sure he’d do so. That broke my heart a little. I’m a pessimist, and suffer from anxiety and am prone to depression, but at the end of the day regardless of how frustrated I am I never stop. I do my best to push through. I don’t do it happily, or optimistically, but I do it. Life’s short and sharp, and for all of us there are people who care and are invested in us – some we don’t even know are – and we should do it for them even if we aren’t interested in doing it for ourselves.
Hopefully my next post will be a good report from this latest scan. Regardless, the adventure will continue.
Update – Results are in, and things still look stable and good. Another x-ray in 4 months.