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.
Postoperative Neuropathy – I has it. There’s a large roving dead spot of no feeling in my lower leg since the surgery. surrounding it, and radiating out, are patches of hypersensitivity. Anything against these patches, even something as thin as a bed sheet, feels like rubbing sandpaper over a freshly skinned knee. It makes wearing pants, and long johns (kind of a necessity here right now) annoying, and it makes sleep nearly impossible.
It seems to be the worst at night. Right now I estimate I’m getting 2 hours or less of sleep at each go before waking up. Sometimes it’s the knee waking me up, as I can easily irritate it changing positions in my sleep, but most often it’s this nerve pain. Once awake it’s difficult to go back to sleep. On a typical night I’m in bed by 9, but not asleep until midnight or later. Then I’m waking up at least once around 2. If I’m able to fall back asleep I reawaken around 4. Usually that’s it for me, and I just get up. This morning, for the first time, I was able to fall back asleep around 4:30 and my alarm woke me at my usual 5:30 time.
I’m trying different methods to combat all this. I’ve had chamomile tea and taken valerian and other supposedly sleep inducing herbs. I’m loathe to take a prescription drug, as I’m finally off of the ridiculous number I was on post-op. Last night I tried a compression sock over the leg, thinking that maybe having something on it that isn’t moving around causing irritation might help. It seemed to, at least a little, though this morning my foot hurts. I may have to cut the toe out of one of the compression socks and see if that helps.
It’s all very frustrating, as it’s severely effecting my focus, attention and motivation during the day. I’m not only constantly in varying levels of pain, I’m also always tired.
There’s no doubt that they cut through some nerves during the procedure. They also moved some around – out of the way – during it. There’s also still plenty of inflammation going on. My hope is that this will all improve over time.
It all began with an achy left knee. It ached for years, really. Then, summer before last, I took a healthy spill while mountain biking and hit it but good on some partially buried lava rocks. After that it really was never the same, and I assumed that I’d done some sort of ligament damage to it.
By November of 2017 it was troublesome enough to keep me from playing soccer with my son. Kicking the ball, especially on the inside of my foot, would set off an advanced ache that would last for days. It was at this point that my wife insisted I have it looked at. I told the ortho that I was sure I’d damaged some ligaments. An x-ray was performed. Much to my surprise my ligaments looked fine. What was concerning was a definite large lump of bone in the top of my tibia. The doctor said it could be a tumor. An MRI was performed. My wife said those damned doctors always go for the worst case scenario, so surely it wasn’t a tumor.
The following week the doctor was running late for my return appointment to discuss the MRI. Very late. Rather than reschedule me, they shuffled me into an examination room to wait in private. About a half hour later, when the doctor still hadn’t arrived and the nurses were continuing to check in on me and assure me I should wait, I knew it had to be a tumor. They wouldn’t keep me for anything they weren’t concerned about.
When the doc finally swept in the room I said, in my most Ahnuld accent, “It’s a toomah!” He didn’t crack a smile. Instead, he rolled the computer monitor my way and presented this: