I know this isn't my usual blog fare. I just felt the need to write this and leave it here for anyone who might be searching the webs for heterotopic ossification (HO) - because there really wasn't a whole lot out there from a personal perspective the last time I checked. If it isn't your bag, come back another day.
First off, pretty much everything I have to say is anecdotal. I'm not a doctor or a medical professional of any kind. I'm also not a researcher. I'm just someone who's lived with HO for 23 years.
Now, what is heterotopic ossification? Well, HO (or as some might call it myocitis ossificans) means bone that has grown where bone doesn't usually grow. Or, to put it simply, bone grows inside muscle and connective tissue. It usually happens when you combine a significant soft-tissue injury with brain damage of some kind. In my case, I had broken my thigh and banged my head. The head injury caused me to grow bone inside my thigh muscles, my butt muscles, and a little through the spot where the leg meets the hip. It's pretty gnarly-looking on x-rays but otherwise no one know just by looking at me.
There isn't a lot out there from a personal perspective because the majority of the people who have HO incurred a significant enough brain injury to make it hard to communicate in any kind of cogent way. Me? I got lucky. I came back from it. Few do.
But this isn't about that.
Last I knew, HO happens in about 25% of the head injury cases. Of the people I went to therapy with back in 1994, only one other client had HO. He was young man who'd been shot in the head and the arm. The arm, of course, became filled with aberrant bone. To the point where he couldn't straighten his arm from the 90 degree angle it was frozen in.
Once it's there, it's there. I have heard about certain surgeries to remove the aberrant bone, but I think that also involves removing a fair bit of muscle. Damned if you do, damned if you don't. I guess, if your HO is bad enough to the point where you can't function, losing some muscle wouldn't be so bad. In my case, I was able to work around it. One leg doesn't bend as far as the other and it never will, but I can live with that.
If your medical professionals catch it soon enough, there is a drug that can be administered to stop the bone growth. If I remember correctly, it was called didronel. Not sure if they're still prescribing it for HO. Unfortunately, by the time you know enough about what's happening to you or your loved one, it's too late to ask about didronel. Personally, the medical professionals on my case in the hospital had no clue about HO, so nothing was done. They assumed my frozen leg muscles were simple contraction and attempted to stretch the muscle free. Which resulted in stretching my tendons instead. When I finally got a doctor on my case who knew about HO, the stretching stopped and he gave me a therapy plan I could work with.
My symptoms were, from what I was told, heat and pain at the site where it was growing. Chalked up to a potential infection and my broken bits, I assume.
As I said, once it's there, it's there. When the process stops and the aberrant bone is in place, it's yours for the rest of your life. And no more will grow. It's like other bone at this point. Which means it's possible to break it. A fact I learned the hard way only last year when I fell and landed on the butt cheek that's filled with HO bone.
When HO bone breaks, it's like any other broken bone. Hurts like hell, makes you a little lightheaded and nauseous, creates glorious bruises... that kind of thing. And there really isn't anything you can do about it. I did read one place that they recommended splinting the affected bone, elevation, etc. Not an easy thing to do when the bone you've broken is inside your butt muscle, let me tell you. Also, like any other bone break, you'll be able to tell the weather with it. I recommend Aleve and ice packs or heating pads, depending on the severity of your pain.
I never got it x-rayed so I don't know if they can actually tell whether HO bone has broken. I know I broke some because I felt the crack and the grinding when it shifted against itself. (Plus, the symptoms.) You can always check with your medical provider if you think you've broken your HO. I don't go to medical providers about my HO anymore because over the course of two decades, I've gotten too many blank stares when I mention I have HO. Like I said at the beginning of this, there's not a lot out there about it. Which means it's not that high on the training radar. I got lucky when I found a doctor who not only knew about it, but knew how to approach a therapy plan for someone who had it.
If you have any questions, feel free to ask - even if it's months after this was posted.
(Any errors in this post are mine and mine alone. If you want information from a professional, consult with your physician, neurologist, orthopedic specialist, physiatrist, etc.)