HO is a devastating condition that turns soft tissue into hardened bone.

By Tiffiny Carlson

It had been six years since the accident that resulted in my becoming a C-6 quadriplegic. And it was one of the most bizarre things I had ever experienced.

I realized something wasn’t quite right when I woke up one morning to find that the skin covering my entire right hip- area and right femur was red, blotchy, and warm. After closer examination, it was pretty clear that the muscles underneath the skin were also inflamed.

Over time, after developing into a harder form of bone matter, my right hip’s range of motion (ROM) became severely limited, which unfortunately still lasts to this day. If you press firmly into my hip and thigh, you’ll notice an odd “that shouldn’t be there” hardness to the flesh, especially when you compare it to my other leg.

After my ROM was suddenly and strangely limited, and before I knew what the heck was going on, I did something very foolish: I forced my leg into a stretch that I shouldn’t have. In all fairness to myself, it was a stretch I’d been doing for years post-injury. I should have just accepted my limits. But I was so frustrated that the limberness of my legs, which until then I had been so happy to have retained, was now suddenly dissipating.

I ended up breaking my femur clean-through, right above the knee. The next day, my knee looked like a giant red softball.

Bone Where Bone Shouldn’t Be

The X-ray taken of my leg in the ER showed a thin, yet prominent, cloudy mass surrounding my entire right thigh and hip—a red flag signalling heterotopic ossification (HO). That cloudy mass was the bone deposits that were inexorably housing themselves in my tissue. It was maddening to see my leg being taken over by this sudden and uncontrollable phenomenon.

HO is the production of bone deposits that engulf the muscles, usually in the joint or long-bone areas of the body. HO can occur without, or a specific warning incident can cause it. Doctors don’t fully understand it and the treatments for it are medieval at best. The condition is so mysterious that the total number of people with SCI affected is estimated to be between 17% and 53%.

According to the University of Alabama at Birmingham (www.spinalcord.uab.edu), HO is “the development of bone in abnormal areas, usually in soft tissues. Heterotopic ossification develops most commonly in individuals who have an injury, such as spinal cord injury, that results in neurologic deficits. It is therefore referred to as neurogenic heterotopic ossification.”

HO only affects areas of the body that are below the level of injury. Hips are the most common area where it occurs, followed by elbows, knees, and shoulders.

Nondisabled individuals who’ve undergone surgery on any joint in their body are also at a higher risk for this Medusa-like condition. For folks with SCI, HO usually occurs shortly after their injury, but it can occur anywhere and anytime within soft-tissue areas of the body.

Slim Options

I had never even heard of HO until I started to develop it. The therapists in rehab apparently thought it was too inconsequential to even mention its existence. That’s water under the bridge, but in retrospect, it would have been nice if they’d educated me on it. I could have avoided a lot of unneeded suffering.

After consulting with a couple of orthopedic doctors, I learned that my options for dealing with HO were slim. I could undergo surgery to remove the bone deposits; but it was not guaranteed that they could remove it all. They also said that a significant amount of blood loss would occur if we went with the surgery. So I shot down this option.

My next option was to undergo radiation treatment to obliterate the bone deposits; another scary and far-reaching treatment that I didn’t want to deal with. Ultimately, I decided to just wait a few months for the HO to “calm down” (i.e., wait for the redness and swelling to dissipate). After that occurs, the HO has most likely ended its cycle and will no longer deposit any more bony matter into your tissue.

It has now been 8 years since HO rudely entered my life. I tend to forget I ever went through it, except for the lingering hardness in my leg that serves as a constant reminder. My daily ROM exercises will never be the same, but I was lucky. I can still do all the daily tasks that I used to do before. Many HO sufferers are unable to do a myriad of things, such as bending over all the way or crossing their legs.

HO often takes away precious abilities so many of us rely on to live in a post-injury body.

In simple terms: HO can be devastating. But if you find yourself, or someone you know with it, don’t lose hope. There’s a plethora of information available to you online that you can review with your doctors to establish an appropriate game plan.

For more info on HO, visit the following sites:

• www.spinalcord.uab.edu/show.asp?durki=21485

• www.emedicine.com/radio/topic336.htm

Tiffiny Carlson is a frequent contributor to Action.