In my latest piece for Muscular Dystrophy Trailblazers, I explain how and why I chose NOT to have a spinal fusion.
My Experience
Aged four, I received a general diagnosis of congenital muscular dystrophy. Many years later, this was specified as Ullrich congenital muscular dystrophy.
Aged nine, I was offered corrective scoliosis surgery.
At the time, I had no idea why I was going to see this new doctor. To me, it was just another appointment.
There was no faffing around; this guy was straight to the point!
He firmly asserted that I needed an operation to prevent further decline of my spinal curvature.
I was horrified to hear of the graphic details, lengthy recovery period, and how it could even prove fatal.
Bear in mind, we’re going back more than 20 years – the whole procedure was very different to what it is today.
Of course, as an adult I now appreciate that with any surgical procedure, doctors are obliged to inform the patient of every potential risk and outcome, including death. But this was pretty shocking and unexpected news to take in at a young age.
How I Made My Decision
As a child, I attended annual outpatient appointments at Birmingham Heartlands Hospital, where I saw a paediatric neuromuscular Consultant.
My parents and I were never given a prognosis, nor any indication regarding if or how my condition might progress. Life expectancy was never discussed and no doctor could tell if I would, in time, come to rely on a wheelchair. We were very much in the dark, living day-to-day.
Frankly, these appointments frustrated and bored me to tears! We would wait hours to see the doctor, and leave knowing nothing more than we did before.
I have, in all honesty, learnt infinitely more as an adult through my own research and from others living with muscular dystrophy.
My point here is that my parents and I had nothing on which to base our decision. Or rather, my decision.
It is now more than 20 years since I was told I needed a spinal fusion. This was pre-Google and pre-social media.
We weren’t put in contact with anyone who had experienced the operation. So, other than a brief verbal overview from the Consultant, we had no other information or point of reference.
After leaving the appointment in a state of shock, my parents told me that ultimately the choice was mine. I decided I didn’t want to put myself through such an ordeal. I was, at that age, considerably more able than I am now, and none of us had any reason to think I would deteriorate as severely as I have.
Do I Regret My Decision?
At the time, it was, or at least seemed the right decision. I was able to weight-bear, finding clothes wasn’t an issue, I was pain-free, and did not require any inhalers, medication or respiratory support.
The procedure back then was much more invasive, and the recovery extremely lengthy compared to what it is today.
My condition was stable, I was happy and relatively able. Under those circumstances, the disadvantages outweighed the potential advantages.
However, I do often wonder how different my life, body and health might be had I said yes to a spinal fusion.
No one predicted that just a year after the offer was made, aged 10, I would become completely non-ambulant within a very short space of time. Had I any indication that this might occur, my decision may have been different.
Though my scoliosis was considerable, the ‘S’ shaped curve is now much greater. Consequently, my respiratory function is significantly affected and basic comfort is a distant memory.
On bad days, when I’m in pain and struggling for breath, or when I’m ill for months (yes, months) with respiratory infections; I do regret forgoing my one opportunity to correct my skeletal deformity.
But, what’s done is done, and cannot be undone. I’m stuck with me! I can’t change past decisions. I simply have to make the best of what I have and keep moving forward.
I’d love to hear about your experiences with scoliosis and spinal surgery.
– Have you turned down corrective surgery?
– Have you had a spinal fusion? If so, how has your life changed as a result? Is it better or worse?
Our son chose to have his spinal fusion at the age of 13. He had dmd and felt that it was the best decision he ever made. We lost him three years ago at the age of 31 due to sepsis picked up in the NHS ICU where he spent his last ten and a half months after getting a trachy. He felt the trachy was a bad decision afterwards as he never got used to it but at the time it was either that or he died ten and a half months earlier than he did. His dad and I have to live with the guilt of the suffering he had to go through.
In the 60s when I was growing up , corrective surgery wasn’t offered until your teens and it was more risky than spinal fusion today . I have kyphoscoliosis , very curved . I’d had an operation on my chest aged 8 as it was collapsing which meant 3 months in hospital and afterwards I was reasonably healthy. My parents made the decision not any more operations and while i wonder what would have happened , I’m grateful for normal teenage years and then university and a great life in London , travelling abroad etc. It wasn’t until I was 41 that I started to have breathing problems and now at 62 need an non invasive vent to help me breathe as my lungs are very restricted. I’m in no pain through which is good , I am happy and still live a good life with my husband.
Yes. I declined the surgery. I was in early high school when I saw someone about my scoliosis. Even before I went to the appointment, I was 100% positive I wasn’t getting it done. And by the end of the appointment, I was 110%. I go to the appointments just to hear what people have to say.
To me, getting the surgery it would have made things more difficult. I wouldn’t be able to eat or drink by myself, or do the things that I loved. It was either live a longer life without doing the things I love, or live a shorter life doing the things I love. I chose shorter.
I had a spinal fusion surgery when I was 13. My scoliosis was about 90° so it was quite bad. I think my parents and the doctor made most of the decisions and I just went along with it. The recovery from the surgery was horrendous. They kept me unconscious in ICU for a week during which I developed pneumonia but luckily I recovered from that. After I woke up I spent another week in hospital on a different ward but I found it almost impossible to sleep the whole week. In fact, I felt like I had forgotten how to sleep and this lasted for weeks. My shoulder was painful for weeks afterwards, I think because of the way I was lying on my front on the operating table. A number of years after the surgery x-rays showed that the metal rods had snapped somehow. I still don’t know how it happened. But luckily the bones and muscle had become stable by that point so my spine hasn’t got much worse after that, but they check it every couple years. Nowadays I am comfortable, I have no pain but it was a long and winding road to get here.