A perspective on Scoliosis, by Chantelle, Scott’s mum (2020)
Scott has x-linked myotubular myopathy. When Scott was 12 it was recommended by his neuromuscular team that he has spine surgery to correct the curvature in his spine. When he went into hospital for surgery, I can honestly say that was one of the scariest days of my life. He was so poorly for the first two days – as although the operation went well, it caused numerous other problems – it was a touch and go situation. It literally broke me in two to see him the way he was. But Scott was just amazing and pulled through like the absolute champ that he is.
One whole year on, I can say this is the best year we have ever had with Scott and it was also the best decision we ever made for Scott to have surgery.
Before surgery, seeing Scott in pain every single day, unable even to get out of bed into his chair for around 16 months, and only being able to treat him with morphine, felt like pure torture. The good news is that surgery has taken away all the pain and given Scott a new quality of life we never imagined possible. He no longer suffers pain in his back, legs or sides since having spinal surgery.
The doctors advised us before surgery that they would expect him to be in hospital for a long period following the surgery, but as it turned out Scott only needed 13 days in hospital in total! He has had no hospital admissions either since coming home to recover. He couldn’t sit up in his wheelchair prior to having the spinal rods put in, whereas now he’s in his chair most of the time. His chest, general health, and whole life in fact has changed so much for the better – he is just a totally different boy now who loves his life and is living it to the max. He makes us feel so proud!
We are really happy to feel like a family once again, who can do whatever we want and go wherever the wind takes us – all thanks to Scott’s life-changing spinal surgery!
Signposting
For more information please visit:
https://www.gosh.nhs.uk/medical-information-0/procedures-and-treatments/spinal-surgery-gosh
Myotubular Trust hopes that this family’s personal perspective helps, but recommends you always consult with your usual doctor or GP for full medical advice, and for any specialist referral for treatments or procedures.
If you need further information, please email us at
contact@myotubulartrust.org or ask a question on Facebook MYOTUBULAR MYOPATHY group
