I live in a town of approximately 100,000 people in central Oregon. When I was diagnosed with a bone tumor at one of the two orthopedists in the city, I was straight away handed my file and x-rays and referred out to specialists in Portland, Seattle and even Texas, because there’s literally no one in my hometown who is qualified to treat my GCT. I ultimately chose to have it handled at Shands in Florida, for a variety of reasons; I have family working in that organization who helped fast track my case, I have family in Florida who could put us up and assist with recovery and, most important of all, Shands is a learning hospital that has a surgeon on staff who specializes in rare tumors including GCT.
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.
I came across this interesting site talking about surgery and hardware in my researching the issues I’ve been having. It’s been 9 months since my surgery, and my knee isn’t right. It’s still slowly improving – I think – but I still have to favor it quite a bit. I can’t kneel on it with weight, it hasn’t the range of motion it used to, and I have to be very careful not to hit the area where the hardware is against anything, even lightly. On cold days or after serious exertion it hurts – not just where the tumor was, but down the tibia, where the hardware reaches.
I never before considered that bones – living bones – bend, and hardware like what’s installed after a surgery like GCT treatment means preventing part of the bone from bending, and placing stress on it. I think that the layman’s assumption about hardware is that it’s supposed to make the area where it’s placed stronger. And in some ways it does… but in others it makes it in a way weaker too.
This time around I had to provide x-rays of my lungs as well as the knee, as GCT can metastasize to the lungs. This proved no small feat, as the facility I go to here in town specializes in orthopedic and decidedly not lungs. The doc I’ve been seeing from the start – the Doc who diagnosed my tumor – assured me that while they couldn’t evaluate a lung x-ray, they’d be happy to take it. This is fine, since I send all my x-rays off to the team in Florida who performed my surgery.
Of course this didn’t go as planned. My normal doc wasn’t in the office the day of my appointment, and everyone else seemed befuddled by the idea that I wanted a lung scan. An appointment that should have been 10 minutes stretched to over an hour as I refused the knee x-ray without also having the lungs. Eventually a doc on duty responded to my increasing surliness by actually going through my case notes and discovering that I had indeed been assured they’d do it.
Then, as is par for the course, they send me home with a disc that only held the lung scans – no knee. Luckily, ever since I had disc lost in the mail I’ve made a point of cutting and ISO before sending them, and this time I noticed the lack of any knee images. Back up to the office I went to pick up another disc.
Two days ago was the 8 month mark of my surgery for the tumor in my tibia. I’ve come to the inescapable conclusion that my leg is forever changed from it, and that’s just something to live with. It gets stiff. It gets sore. It randomly hurts. The nerve deadened area long since stabilized but doesn’t feel as if it has shrunk at all. It feels… delicate. Kneeling on it is a sketchy proposition. And although I can now bend it nearly as fully as my other leg, doing so feels wrong. Doing so, things within feel crushed and stretched and at-risk.
Despite the above paragraph, this isn’t a downer update. I’m leagues from where I’ve been since the surgery. I still don’t run at all, but I’ve begun mountain biking again.
Someone coined the term “scanxiety,” and I have it. Scanxiety is the anxiety that precedes the next x-ray. It’s a weird, double edged thing. I’m simultaneously scared and anxious, yet also excited to (hopefully) feel the relief of getting another All Clear from the docs. Giant cell tumors have an estimated 20% chance of recurrence/growing anew. Matters are made worse for me since the x-ray is done here locally but then has to be mailed (yes, mailed, because apparently parts of the medical profession are stuck in pre Y2K land) to the surgeons who did the procedure in Florida.
Today is 4 months to the day of my GCT surgery. No more official PT for me. I “graduated,” whatever that means. To continue my progress I joined a gym for the first time in years. There I do the various leg machines I had been doing in PT. I also walk on the treadmill on days where I haven’t been able to go for a walk outside. I still cannot jog or run, though I make an attempt about once a week. The muscles are willing – sort of – but the knee can’t yet handle the impact. This makes the treadmill boring and frustrating. I used to run at 6.5-7 miles an hour on a treadmill. Now it takes me half an hour to do 2 miles. I do pretty well on most of the leg machines, but the one where weight is lifted by the front of the ankle is my nemesis. 25 pounds is too much, and makes the knee hurt.
There are still good days and bad. Weather continues to effect it dramatically, as does night time. Some mornings (like this morning) it wakes me up with a persistent aching. It’s odd where it can hurt. Some places make sense, but sometimes pain will come from well below the incision. Perhaps that’s a result of the hardware and screws. I’m also having trouble with what I’ll call restless leg syndrome. No matter how tired I am I find that I cannot sit still or find a comfortable position in bed. It’s frustrating.
Today marks 3 months post op on my tumor. Random musings follow.
I found some GCT support groups on Facebook, but I’m somewhat loathe to recommend them. Just as when I found support groups for SIBO (another condition I have), I worry that the their memberships are skewed toward more complicated/difficult situations. This only makes sense, as people who are experiencing protracted complications are far more apt to seek out support communities then are those who’ve had a relatively trouble free experience. Reading frustrating story after frustrating story can be frightening and, frankly, a bit demoralizing. I think it’s important to remember whenever joining a group like this that a significant percentage of its population seem to be having a hard time doesn’t necessarily translate into a significant percentage of everyone who has had this condition having a hard time. Some people get a GCT, get surgery, get better, and move on. Success stories don’t often join a support group. They don’t need it. Meanwhile, members of the support group post things like this:Presumably because their experience has been such that, to some degree, their GCT defines them. This is not a criticism – I totally understand. However, personally I’m not interested in letting the negative aspects of my life define it.
Next Tuesday will officially be 3 months since the surgery for my giant cell tumor took place. I still have good days and bad days. Some days I manage a 4.5 mile walk. Other days I can barely muster 1.5 miles. While it still hurts every single day, some days are far worse than others. I “finished” with physical therapy – which doesn’t in any way mean my leg is back to full strength or that my knee is 100%. It means they’ve given me the tools to continue my rehabilitation on my own.
Random takeaways at this stage of recovery:
I’ve struggled with my focus, attention and memory retention quite a bit. I have a difficult time concentrating and staying on task. Sometimes I forget words. I’ve read a few new studies about the affect of anesthesia on the mind and I wonder if that’s the culprit. I was put under twice for a not insignificant amount of time in the space of two weeks (once for biopsy, once for the procedure) and was on a variety of pain medications for a month if not longer.
The hardware they installed is irritating, literally. I can feel the top and bottom periphery of it. The top, which covers the site of the tumor, is constantly irritated and tender – much more so with exercise. I wonder if that will ever subside.
I’m able to fully straighten my leg, but still lack 5-7 degrees of bend as compared to my right leg. Trying to bend it further feels both painful and just plain wrong, like there’s some resistance inside the joint. Low level swelling is still present, and that may be the culprit. I’ve been told it can take 6 months to a year for swelling to disappear entirely.
I’m frustrated by the fact that between the bone growth around the tumor and the hardware it appears that I may always have a prominent lump below my knee that I will have to be careful and cognizant of:
Weather has a profound impact on the joint. We had a few days in the high 50’s/low 60’s, and it felt comparatively wonderful. We’ve also had days well below freezing, and it would feel as if it didn’t want to bend at all.
While I’m sleeping far longer than I had been, it still wakes me aching every morning without fail. I often don’t feel properly rested regardless of how long I’ve slept, and and any extended exertion wears me out. I still tend to be in bed between 8:30-9:00 every night (for proper perspective, I wake at 5:30 AM for work).
Remaining in any position for too long is a recipe for pain. Sitting, standing, laying down, whatever. If it isn’t allowed to bend or move for any period of time it begins to ache.
I miss running and biking, but I also know that to attempt either is a recipe for disaster. Running in particular would be impossible. I’ve tried a light jog. The impact causes pain and the joint feels utterly unreliable.
The good news is, despite the challenges, I continue to improve. The day of my PT discharge one of the staff told me they thought my surgery had been in October, not December. That, I suppose, is a testament to my recovery. While I don’t pretend to be at all versed in joint replacement, some doctors and therapists have said they consider this to be more debilitating and difficult to recover from than knee replacement. I’ve been told the tibia bears the brunt of your body’s weight far more than your femur, so it being compromised – fairly significantly in the case of my not-at-all small tumor – is profoundly impacting. I have no idea if this is true or not.
I’m posting all of this online, rather than in my private journal, because when I started researching after having been diagnosed I just didn’t find much out there to help me understand what I was in for. I hope that other people diagnosed with giant cell tumors will discover these posts and find them helpful.