08 October 2014

Dwarfism Awareness Day 8: Bianca Marie asked why I’ve had so many surgeries and continue to have them. I had many surgeries as a child so that I could walk better and without so much pain. I had several osteotomies to straighten my legs, which had what is called a windswept deformity. As a result, I have several metal plates in my legs. I also used crutches from ages 8 to 18 since I had trouble getting around quickly and had terrible balance. In addition to my osteotomies, I had a knee reconstruction done at 12 to fix underlying structural problems that were affected my left leg, making the curvature in my bones even worse.

As an adult, all of my dwarfism-related surgeries have been joint replacements. As I said in a previous post, I have severe degenerative arthritis in my major joints. I had both of my hips replaced in 2005, a total knee replacement in 2007, a shoulder in 2013 and another in 2014.

One of the things that is difficult beyond the surgery itself is finding a surgeon who can do it. As a child/young adult, I was able to see a pediatric orthopedic surgeon at the Children’s Hospital of Denver, and he did all of my surgeries. The problem with dwarfism, though, is that, because it is congenital (you are born with it), most specialists are pediatric physicians, which becomes difficult as the patient ages. Some Children’s Hospitals permit doctors to see adults, while others do not. As a result, I’ve had my joint replacements all over the country, as I’ve had to search for that one person who can do it. Joint replacements aren’t normally that difficult, but when you add very odd anatomy to the picture, things can get tough.

My hips were pretty straightforward, so I was able to have them in Denver, which is where I lived at the time. However, my knee was a different story. My ligaments were too lax to support a “normal” knee replacement, so I had to have a hinged knee replacement that could provide the support that an anatomical replacement could not. This means that I cannot bend my knee to 90 degrees, making a lot of things more difficult than they used to be, but at least I don’t have pain. I had this surgery done by Dr. Ain at Johns Hopkins. My shoulders were also very difficult, and the shoulder surgeon (best in Indiana) that I saw said he was not comfortable doing it and recommended Dr. Iannotti at the Cleveland Clinic, which is where I had both surgeries done. Again, my odd anatomy caused problems, and my most recent surgery meant a reverse shoulder replacement because he couldn’t get the anatomical parts to “stay.”

I will continue to have surgeries as I age, because artificial joints only last for so long. I’ve had my hips for almost 10 years, so they’ll probably be good for another 5 years or so, then I get to do it again! Beyond that, I have terrible arthritis in my ankles. My right ankle joint has fused itself from the arthritis, and I am waiting for medicine to catch up with technology. My only option at this point is to surgically complete the fusion, but this would rule out any replacements or other work in the future. So, I’m holding out while I can.

The most recent development is spinal arthritis. I’ve had it for several years, but it has recently started to really bother me, giving me nerve pain down my entire left side. This could be from a herniated disk, inflammation, or spinal stenosis (narrowing of the spinal canal), which occurs in my type of dwarfism. I’m scheduled to see a doctor at the skeletal dysplasia clinic in Cincinnati, so we’ll see what information/news they can give me.

I would say that the most difficult part of my joint problems is worrying about what aging will do to my body. I already feel as though I have an older body, but I am not yet 40. I am sure that a scooter or wheelchair is in my future, and Max helps me with more than most people see. Chronic pain is probably one of the biggest challenges I’ve faced in the past 5 years.

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