Today, my case manager had me pulling out old medical records of mine. There’s a lot that I didn’t think to keep, especially in the first several years that I managed my health on my own. Some years later, I went back and requested records from certain doctors. I haven’t always read them in full after receiving them and I have mixed feelings about that.
In May of 2001, I had surgery on my left knee. (I’ve written about this surgery before for a different reason.) My knee was repeatedly “locking” and my orthopedist at the time thought it was due to a tear of the meniscus. The surgery was to make a repair to the meniscus, but when I awoke I was told there was no tear. I was told that nothing was found other than excess fluid, which was drained. The surgery left me shaken (for reasons mentioned in the previous link) and physically weak. I didn’t request the medical records about the surgery for several years and when I finally did, it wasn’t the notes from the surgery itself that I focused on. That may have been a mistake.
The surgeon did find something during that procedure: evidence of lateral patella subluxation. But no one told me. For some reason, the surgeon didn’t think it was important or unusual that a 20-year-old had a knee that was repeatedly subluxing.
I was diagnosed with fibromyalgia twelve months later. Fifteen years later, I was diagnosed with hypermobile Ehlers-Danlos Syndrome by a geneticist. (Doctors and physical therapists thought that I had hEDS for years before I was able to get into a geneticist.)
For years I thought I had some weird form of hEDS where only my SI joints went out of alignment. I thought my knee “locking” was from iliotibial band syndrome or some other thing. When I’d have to go to the ER with my knee stuck in a bent position, howling in pain when any attempt was made to straighten it, I was told the knee wasn’t dislocated, at least not by the time I got to the ER. No one said that maybe it was sliding back and for sure, no one mentioned subluxations.
I spent almost ten years resetting my knee by myself before the scar tissue became so built up that I could no longer do it. The ER would give me dilaudid and send me home on crutches to reset it myself — they were always too scared to do it for me. After several trips to the ER with my knee locked in place, an orthopedist finally agreed to do what was considered at the time (2008) to be an experimental surgery: lateral retinacular release with medial patellofemoral ligament reconstruction.
The surgery, though it has a bad reputation, worked for me. I’ve only “locked” my knee twice in the ten years since the release and reconstruction. Both times were within months after surgeries on my left hip.
But in all the time since the locking started when I was still a kid, no one bothered to tell me I was subluxing my patella until my physical therapist started taking my history in 2012, after my first hip surgery. That was the first time I heard about Ehlers-Danlos. I had to ask her to repeat the name over and over again, over multiple visits, before I finally had her write it down for me so I could look into it.
She was right, of course.
Had it been caught earlier, maybe I wouldn’t have needed two hip surgeries (with a third on the way). It can’t be undone and I can’t go back in time. While I’m cognizant that it’s only recently that some doctors have started to know to look for EDS, it only hurts a little less to know that.
Every time I think I’m coming to terms with my health/disability, some new little puzzle piece makes its way to my attention. Then I start to grieve all over again. But each time, it hurts less and it hurts for a shorter amount of time.
I guess I’m getting there, to the nearly-mythical land of acceptance, where grief and anger are only shadowy memories lost in the perpetual brain fog of my life. I’m not there, not just yet. But I think it’s on the horizon.