The Perspectives on Scoliosis stories first appeared in the Information Point newsletter Our World in 2011 following a webinar in which the Myotubular Trust, the Joshua Frase Foundation and Cure CMD joined up to help patients and families with myotubular and centronuclear myopathy and congenital dystrophies. The webinar was a free web and audio facility for all attendees and involved perspectives from eminent surgeons and clinicians in both the US and UK. To coincide with the webinar, Our World featured information about scoliosis and interviews with people who had experience of scoliosis. Sukhi’s perspective is below.
What form of CNM/MTM do you have?
Congenital Myotubular Myopathy, but I’m not sure which one yet.
How old were you when you had scoliosis surgery?
When I was 18 years’ old, I am now aged 20.
Where did you have your scoliosis operation performed and by who?
I had my operation at the Royal National Orthopaedic Hospital under Mr Lehovsky.
Can you describe what issues you had which lead to the need for surgery (eg curvature, discomfort, difficulty with ventilation and squashed lungs, difficulty sitting)?
I was permanently sat forward, leaning on my elbow for support only having one hand free and sometimes not having any hands free. I also had shortness of breath, so that when I spoke I would say individual words before needing to take another breath. This is because my lung capacity was restricted.
Were you given anything to help alleviate the symptoms you had before surgery, and did it help?
I did have a brace which I wore but by this point it made no difference to my posture.
What did you feel about the prospect of corrective spine surgery?
I was really scared, I didn’t want it at all as I have had bad experiences in the past which has clouded my judgment in having spinal surgery. This was because my previous operation was a tendon transfer and they did not manage my pain well at all. Therefore my fear about going through a spinal fusion was based on my fear of pain.
How did you prepare yourself for surgery – do you have any hints or tips?
I didn’t really prepare for it, I buried my head in the sand and got upset when people spoke about it. Then, my parents collected me from college one day stating they had a date for the operation which was in a few days time. Looking back I’m glad it was done this way as I had less time to be scared and it forced me to realise how bad things had got.
Describe the first days immediately after surgery and what things did you do to try to cope and get through it?
This is difficult to remember because they started to operate on me but then had to abort due to some problems they faced. (Please don’t be afraid by this as this was just something that happened to me and is not normally what happens when going through spinal fusion). So, after this I required a tracheostomy and the fusion went ahead. I was heavily sedated for about a week after the operation, and I certainly don’t remember pain from the back operation but naturally when I came round my family were concerned and they kept asking me was I in pain? My reply was no I wasn’t. The tracheostomy was temporary so I no longer have that.
What happened when you went home? Did you need much time off school?
I was attending a residential college at the time, so I went to college from the hospital with a short weekend home for my birthday. I returned to the college where I received the care I needed but did not go back to my normal lessons until about four weeks later when things were ‘back to normal’ ie being able to be back in my chair all the time.
What things do you think most helped you recover from surgery (eg; equipment, nursing help, activities, exercise, friends, etc, etc)?
Support from friends and family and the good nursing care I received from ITU really helped me recover. At first I was only able to sit in my wheelchair for a little bit of time but as things improved I was able to get back to being in my wheelchair as normal. This was still worked on when I went back to college.
I was not able to sit up after surgery until I had been fitted with a brace. This, for me was the hardest part as I find it very uncomfortable to lie on my stomach. The brace is only temporary and fitting it is done in two parts – you lie on your back to do the front and then they remove that and turn you onto your stomach to do the back. Then, when you get the brace it is in two pieces – so to put this on you roll on your side, the back piece is positioned and you roll into it onto your back then the top half is placed whilst you are on your back and then it is fastened. The brace wearing after the operation was only a temporary thing, but I can’t remember how long this was needed for exactly. Boredom during the recovery period was an issue!
On reflection, is there anything you may have done differently?
No, I wouldn’t do anything differently.
Is there anything that you can’t do after surgery? Or perhaps there are things that you can now do that you couldn’t do before?
Before I had the operation I would be lifted everywhere i.e from my wheelchair into the car. But after the operation this is not the case. Hoisting is the way I had to be transferred but this will need to be discussed with the surgeon beforehand so that necessary arrangements can be made to provide you with hoisting equipment, etc if you don’t already have it.
Surgery has meant that I have both hands free, no brace and I can wear anything without being conscious of a brace showing. Having both hands free, for me, is the main benefit from the surgery, because I am now able to do simple things like using a Wii remote more easily.
I can also now swim on my back using just a head float. It has always been difficult in the past to do this because of poor neck control. The increased lung capacity is also a major benefit.
On balance, are you glad that you had scoliosis surgery done and has it improved your quality of life?
Yes, I’m glad I had it done.