There is a thin line of a scar that creeps down the center of my back. It is a visual reminder of the spinal fusion procedure I had 16 years ago. Patients with Duchenne muscular dystrophy (DMD) can develop scoliosis – a curvature of the spine – thought to be the result of the progressive muscle loss brought on by the disease. The surgery is done by implanting titanium metal into the patient’s back, which gives the spine the support its lacking. Medical advances have made this operation easier for someone with DMD than it would have been just a few decades ago.Two of my late uncles had more persistent back issues, which I fortunately have not experienced.
It was the morning of June 20, 2005 when I arrived at Cincinnati Children’s hospital to undergo the spinal fusion. My nerves were on overdrive because I had no idea what was about to happen to me. Since patients with DMD are prone to severe heart and lung weakness, this surgery is typically done at a young age to avoid complications. I was 11 years old and probably had not been more scared in my life before.
I was in a small waiting room when a nurse came in with a cup I was asked to drink from. It had a bitter taste. This would turn out to make a huge difference with the fears I was experiencing in the early stages of this process. It’s one of the last things I remembered for a while.
The next thing I knew I gradually became conscious and heard someone say I was waking up. Over the next day or so this is about the only memory that is clear to me. It seemed like just a blur of faces, including my family, doctors and nurses. I was then taken from the ICU to the room I would stay for several days.
It was the first night there where my surroundings were really starting to overwhelm me. The sight and feeling of all the wires on me hooked up to machines made me start to panic and then cry. I distinctly remember a nurse quickly entered the room to offer reassurance that I was ok, which helped me get back to sleep.
A carousel of people came in the next few days to help with the care I needed for the initial recovery. I was still a little jittery, not knowing exactly what to expect. In my semi-delirious state of being on pain killers, I can remember constantly asking people, “What the heck are you doing?” Despite this everyone was still very kind to me.
Sleepless Nights and TV To The Rescue
My sleeping was very much out of sync. I was asleep during much of the day and awake at night. The TV turned out to play a big role in keeping my anxious mind occupied. I can still picture watching the premiere season of “Dancing with the Stars,” kids’ movies like “Shrek 2” and game 7 of the NBA Finals between the Spurs and Pistons. It might seem small, but having all these entertainment options were key in helping me get through my hospital stay.
It was expected that I would be in the hospital for a week or longer. Amazingly, after just 5 days I was given the green light to go home. The recovery process would go on for the next few months. I had a red, white and blue back brace because it had been around the Fourth of July when I had the surgery. The hardest part was over though.
I genuinely believe that this compassion shown toward me by all the hospital staff contributed to expediting my recovery. They could tell how frightened I was and made sure I remained calm. Naturally this whole experience was somewhat traumatic, but the way I was cared for likely mitigated a lot of this.
The main advice I would have for providers in a situation like this is to understand that there is a good chance your patient is feeling terrified inside and would benefit from actions that ease this. Use language iterating that they will be OK, for example. This could probably help adult patients undergoing a serious procedure as well.
Looking back I’m grateful for getting the spinal fusion because there is a lot I’m not sure I would have accomplished in my life without it. Graduating from college comes to mind. The hospital staff who cared for me honestly might have saved my life.