The unknown issue
With SMA comes so many new unknown issues, things that you never even thought would become a daily issue. At the end of 2021, I was experiencing extremely bad pain in the small toe on my left foot. I had gone to see my GP who said I’m going to need to see a specialist. We had x-rays taken and I had left my GP extremely deflated feeling like it was just going to be another (it’s just part of having SMA) issue. The first problem with my x-rays is that my bones never look like fully formed normal bones because they’ve never had to develop.
Experiencing issues like this is extremely frustrating because it’s something that could have been avoided with physiotherapy and splints but because it’s so unknown, we realized it too late. This is why the fix is a little more complicated. This exact situation shows why we need information and why medical professionals also need to fully understand all these rare diseases.
Getting answers
My second problem was getting an appointment as a visit with a specialist is never a quick process. So, for about 5 months it was cream, ice and stretching to get rid of the pain. I managed to get an appointment for the beginning of 2022 to see a specialist. The specialist suggested a Keller’s arthroplasty. This is done under a general anaesthetic. Where the surgeon makes a small incision (cut) over the joint in your toe. They then remove a small portion of the bone in the joint which increases the range of motion. Then they replace the removed bone with a soft tissue to create a “false joint”. They then add a wire which will be removed in four to six weeks.
Surgery is never the greatest option however all I wanted and needed was an answer. I’m more than happy to fight through the pain and get surgery if it means it’s going to fix something.
Surgery day
Having surgery is always extremely nerve-wracking. As much as I keep telling everybody it’s going to be a small procedure it’s still stressful. Most of my previous procedures have been early in the morning so I haven’t had to wait a long time. This time I woke up extremely early and paced around for hours. I am not an extremely patient person and hospitals make me more impatient.
It is important to acknowledge the extremely helpful and kind nurses and anesthetists that I had. I have never had such a dedicated and kind anaesthetist before. She even assisted in getting me into the bed when we arrived. Due to quite a delay in getting admitted, there was not much waiting done once I was in. Did the usual 100 forms and we were off to the theatre. It’s always an anxious feeling however and I often close my eyes because it makes it seem a lot less dramatic. The anesthetist managed to find a vein in the first go, which for me is a miracle on its own.
When I woke up, I was hysterical and in tears, I’m not quite sure if it was relief that it was over or fear that it was just beginning. A very kind nurse encouraged me to keep pushing and to remember that it’s just part of my story. I always know that when I get back to my room my mother will be there and it’s encouraging to have a sense of comfort and home. I didn’t experience any pain as I had a local as well as a general anaesthetic. Originally I was meant to stay overnight however I was told I could go home that evening. It is always easier to be in your own bed at home. I got up and dressed and we headed to the drop off zone where my father was going to fetch us.
After not eating since 8 pm the night before it was now 7.30 pm and I was starving. When I got home to eat some pasta for dinner and watch some TV with my parents where I slowly just got paler and paler. It got to the point where I thought I was either going to throw up or pass out. Took some painkillers and went to bed where I was for the next few days. Anybody who knows me well knows that I am not good at doing anything therefore bed rest and I am not friends. For once I decided to take it slow, let my body rest and recover.
Recovery
One of my biggest difficulties is being so anxious that I’m going to bash it because the surgeon said if I move or damage the pin I’m going back under. I am incredibly exhausted because I am permanently paranoid. It is about four days after surgery and I’m finally getting into a swing of things. In two weeks, the time I will be going to get the stitches taken out and bandage removed. The pin will stay in for four to six weeks. Here is to a happier and straighter piggy.
