Those of you that followed my recovery have probably heard how my Heterotopic Ossification has turned out. Since I am still dealing with it I think it would help others out to learn from my experience. This story is a not short, but I found that there is still very little information about personal experiences with HO online in SCI forums and websites. Everyone’s experience is different, and mine is certainly unique, so please read this if you or someone you know someone who is suffering from HO. This is not clinical research, but having been through the process as a patient I have learned, the hard way, many of the questions that need to be asked and how to go about dealing with this ailment.
Heterotopic Ossification is the spontaneous formation of bones in tissue where bones normally do not grow. This most often occurs as a response to Spinal Cord Injury and Amputation of a limb/limbs. In amputees it often forms near the injury site and in paralyzed individuals it occurs most often in the hip joint and sometimes in the knee joint. The bone that forms is often spongy and not as dense as the other bones in the body. For this reason it will almost never be visible from conventional X-Ray imaging, but can be detected with CT scans. Usually, if a medical professional notices this on your imaging then you are probably already experiencing other symptoms related to the disease, including hardness where the growth occurs, limited range of motion or abnormal popping noises when attempting to conduct range of motion exercises, and elevated lab results (specifically Alkaline Phosphotase).
In hindsight, my HO probably started within the first week after I was injured. After my wife was taught how to stretch my legs we started noticing abnormal popping noises in my hip and then increased range of motion after the pop. To this day I still have the same pop in my right hip and then an increased range of motion after the pop. The doctors at the first hospital I went to didn’t seem concerned with the popping noise at all. Once we transferred to a hospital with a large SCI rehabilitation facility the doctors identified an abnormally high result on my labs for Alkaline Phosphotase, and became concerned, but still did not mention HO until a couple of weeks after I had been a patient at the hospital, and after I read the Wikipedia article that mentioned the symptom of elevated lab results that I shared with my doctors. They then took images and found that I had bony matrix growing on the front of my hips from the top of my hip crest all the way to a point 4” down my femur. Essentially, I had a new set of hips in addition to my original ones.
My labs started to normalize and the doctors put me on drugs to help stop/slow the growth of the bony matrix. The drugs were very problematic, since I was supposed to take 4 pills in the morning and evening, but not eat anything 2 hours before or after each dose. This proved to be more difficult than I expected during the 12 week course of treatment. At this point I also found that treating HO with radiation therapy was only successful in preventing the formation of the bony matrix. I was left with what I had and told that after a year or so the matrix would stabilize and, if I was willing, could pursue the surgical removal of the bones. For the time being I had to deal with the extra bones in my hips. The bones prevented me from reaching hip extension beyond 85-90 degrees, which proved to be a significant issue for a new wheelchair user, and increased the level of muscle tone and spasticity in my legs. I wanted to get surgery as soon as possible.
Once I was six months post injury I started meeting with doctors and surgeons to see who would be willing to remove the bones from my hips. I found doctors willing to perform the surgery, but only for functional gains and increased quality of life. Every surgeon I spoke to gave me a litany of issues that would likely arise from the removal of the hip bones. The risks they mentioned included a high probablility of infection, a high loss of blood that may require a blood transfusion, a high likelihood that the bones would return and could come back worse than they were originally, and the fact that to fill the void left where my bones were could require a skin/muscle graft. I agreed regardless, and believed that the increased range of motion would be well worth the potential risks.
I had the surgery, and the doctor removed a significant amount of bone that was intertwined with my Sartorius, which I no longer have in my left leg. When the doctor was complete with the surgery I had a significant improvement in range of motion, nearly120/125 degrees. This increase made my life much easier, whether I was pushing my wheelchair, picking something up off of the floor, or transferring. The day after surgery I received a small dose of radiation in my left hip that would increase my chances of preventing the bone from coming back. The Orthopedic Surgeon said ‘it wasn’t if, but when the bones would return,’ but the Radiologist stated that, in his experience, with radiation treatment there was a 80-90% success rate at preventing regrowth.
When I followed up with my Orthopedic Surgeon the week after the surgery things seemed to be going alright. Everything had healed except for a small pinhole in my leg. He poked the hole with a Q-Tip to see how for the hole went and it went all the way down to my femur. This cavity was continuously filling with scirrus fluid and blood and expressing itself through the small hole. The doctor said there was a 50/50 chance that it would heal properly and that we would give it a chance before going back in to repeat the closure surgery.
Six weeks later I began experiencing violent symptoms of infection, including fevers, chills, increased drainage, redness around the site, general malaise and weakness. I went back into the hospital where they confirmed that it was infected and immediately put me into surgery. I spent a week in the hospital and had three irrigation and debridement surgeries. I left the hospital and had a Wound Vacuum Assisted Closure (V.A.C.) to help the wound heal. Two weeks after leaving the hospital I went back in to get the wound surgically closed. It was closed over suction drains, to assist with the drainage, and then I returned home. A week or so later I noticed issues with the suction and drainage from the wound. It wasn’t closing and there was a small hole similar to the one I had before my infection. The doctor restitched it and gave it one more try. It still didn’t close properly and then we went back to surgery with a plastic surgeon to allow him to weigh in with regards to skin/muscle grafts as a method of closure. The Plastic Surgeon suggested a couple of months with the Wound VAC to see if it would close the wound. A week after he placed the VAC I told him the numbers I had for drainage and he suggested I go to a non-military hospital where they have more experience in dealing with surgical wounds that go awry, like this one did. It seemed that the main issue was that the bones removed were so close to my hip joint that joint fluid was constantly leaking from the hip joint.
Luckily, the strand of staph infection I had was not MRSA or VRSA, and was relatively easy to treat. I took IV antibiotics, for nearly four months after the infection was diagnosed, and transitioned to oral antibiotics for another three months to ensure that the infection did not get into my bones that were so close to the surgical site.
I was lucky enough to be seen and treated by some of the best surgeons at UCLA, one of the best teaching hospitals in the country, and after one surgery the wound closed properly over drains. After a period of a few months the drains stopped draining to the point where they could be removed, and the wound was healed. This was quite an ordeal (lasting around 8 months with the antibiotic treatment), but regardless of the complications I really enjoy the benefits and would certainly do it again. If I knew what I knew now though I would probably schedule three months off of work instead of two days. I also had initially planned to have the surgery on my right hip but after doing range of motion exercises and stretching (and a few bony pops) the right hip has an almost normal range of motion. At some point I may look to have the surgery but for now am enjoying my time spent outside of the hospital
The most thorough ‘scholarly’ article I found regarding HO was on Wikipedia. Someone did a very good job editing this article and included many current references regarding the ailment. Unfortunately, I didn’t find this article until about a month after I noticed the signs of HO in my body.
In summary, if you know anyone that is newly paralyzed or an amputee, I highly suggest you refer them to some of the reference materials regarding this condition. Every situation is different, but I can certainly tell you from my experience that early prevention of this condition is much easier than getting rid of it once the bony matrices have settled. Finding a good surgeon to do this surgery is very difficult and you should ask very pointed, sometimes uncomfortable, questions including:
-How many times have you done this surgery?
-Are there clients you have done this operation on that I can contact?
-Is this hospital equipped with advanced surgeons who can assist if there are complications with my surgery?
Many doctors and surgeons have never heard of this condition before. The first Orthopedic Surgeon I saw about this issue asked me ‘Heterotopic Ossification? What is that?’ followed by ‘Can we even do that surgery here?’ after my explanation of the condition. No matter how you look at this condition, it is very serious and life-changing for individuals already dealing with catastrophic injuries. My advice to everyone at risk is to prevent it before it starts and to do as much research as you possibly can to understand the potential courses of treatment before going under the knife.