One of the most common treatments for individuals with Osteogenesis Imperfecta (OI), also known as brittle bone disease, is rodding surgery. This procedure involves inserting metal rods into the long bones to strengthen them and reduce the frequency of fractures. For those living with OI, a major challenge is that their bones develop abnormally. This results in bowed limbs that are prone to breaking. I can personally attest to the struggles of having fragile bones, especially before I had the life-changing procedure of rodding.
Before I received my rods, I broke my forearm countless times. There were periods in my life when either one or both arms were broken simultaneously! These recurring fractures were part of my daily reality. My rodding surgeries gave me the stability I needed to live more freely and reduce these painful breaks.
How Rodding Surgery Works: Strengthening Bones
At the age of four, I underwent rodding surgery on my legs—one after the other, just a month apart. Before the procedure, even minor accidents, like catching my toe on a buttonhole, could break my tibia. The rodding surgery was a pivotal moment in my life, particularly for someone living with OI.
To explain the process in simple terms: when a limb is rodded, the surgeon makes an incision, removes the muscles, tendons, and nerves, and takes the bone out of the body. The bone is then carefully broken into several pieces and threaded onto a metal rod. The cracks in the bone are filled with bone marrow from a donor bank, and the now-straightened bone is reinserted into the body. This surgery typically involves breaking the bone several times (between five and eight), which, while painful, strengthens the bone and helps prevent future breaks.
The procedure also ensures that the bone is less likely to break into multiple pieces, as the rod holds it in place. If the bone fractures, the rod prevents it from fully separating, promoting faster healing.
The Benefits of Early Rodding
When I had my legs rodded, I became the youngest and smallest person with OI in the South to receive telescopic rods, which expand as the body grows. My mother was instrumental in advocating for this cutting-edge treatment, even though it was not commonly done for someone as small as I was. Eventually, my doctor agreed to use them, which was a groundbreaking decision for both me and my medical team. My first surgeries became a pioneering effort, earning my orthopedist significant recognition in his field.
The recovery process was tough, involving a half-body cast and extensive physical therapy. However, the results were life-changing. Thanks to my mother’s advocacy, I healed much more quickly than I would have had I been an adult. The risk of repeated breaks has significantly decreased.
Overcoming Challenges: The Long-Term Impact of Rodding on Bone Health
Despite the positive outcomes of the surgery, there have been ongoing challenges. When I was seven, I had my left arm rodded, but the bones in my arm were too small to use telescopic rods, so traditional rods were inserted. Over time, my arm outgrew the rods, and it began to grow crooked again. Fortunately, this doesn’t cause significant pain unless it’s accidentally hit, which can feel like hitting your funny bone. For now, I’ve opted not to redo the rods in my arm, as the surgery to insert them was incredibly difficult and resulted in long-term breathing issues. Due to these complications, I’ve avoided further surgeries unless absolutely necessary.
However, even with the occasional pain and the challenges of surgery, the benefits of having the rods have been immeasurable. Since the procedure, my bone fractures have become much less frequent and severe. This has greatly improved my ability to live a fuller life despite the constraints of Osteogenesis Imperfecta.
Advice for Parents of Children with Osteogenesis Imperfecta
If you’re considering rodding surgery for a child with OI, my advice is to have it done as early as possible. The younger the child, the easier the recovery process. Children typically heal much faster than adults, and their bones are more adaptable to the rods. I have only a few memories of the surgeries, and most of them are hazy, which I consider a blessing. The pain, though present at the time, doesn’t linger in my memory. The surgeries didn’t disrupt my school or social life, and I was able to recover with minimal impact on my daily activities.
As an adult, I now realize how much harder it would have been to undergo the same procedure today, with the added responsibilities of work and adult life. I am incredibly grateful for my mother’s persistence in pushing for this treatment, as it has had a profound, positive impact on my life and my ability to create art.
Strength Through Art and Motivation
For a disabled artist like myself, the journey with Osteogenesis Imperfecta has been both challenging and empowering. The surgeries have given me the strength to continue pursuing my passion for art while managing my condition.
Rodding surgery may not be a cure for Osteogenesis Imperfecta, but it has provided me with the stability to live a more fulfilling life as an artist. Whether I’m painting or simply living, I choose to face my challenges head-on, knowing that I can continue to make a difference through my art and my story.