A Cobb angle of 44 degrees in his upper spine from T5-T11
We first noticed there was something not quite right with Angus’s back when he was 10 (2018). His right shoulder blade seemed to pop out more. At first, we thought it was a more developed muscle on that side as he plays cricket and is a bowler. We started seeing a physio who said he did have some degree of scoliosis, but we could try some exercises to try to strengthen his weaker side. After some time, the physio rang me to say he wasn’t happy with how Angus was progressing and thought we should seek more specialised advice. In June of 2019 we ended up at the scoliosis clinic.After examining Angus, we were told he had Adolescent Idiopathic Scoliosis with a Cobb angle of 44 in the upper part of his spine from T5-T11.
The only way to try to correct it would be through bracing or surgery and surgery was the last option. He would need to wear the brace every day, all day, until he stopped growing, which really shocked me as he has years of growing ahead of him!We booked in to have a 3D body scan so they could then make the brace and about 6 weeks after that, he received his first brace. It looked so uncomfortable, but Angus took it in his stride. He was allowed to take it off for any sport activities and to shower or swim, but otherwise he was in it all the time. It took us a while to find the right kind of undershirt to wear under the brace so that it didn’t chafe on him too much. He learned very quickly how to roll out of bed and eventually to bend down to do his shoes or pick things up. I went to his school and spoke to his class about scoliosis and the brace and what it all meant for Angus. The kids and teachers were all very supportive and it wasn’t long before it became second nature. There were hard days & nights when it was very hot and he was sticky and uncomfortable. Wearing the brace did show some improvement for Angus’s curve when we returned for a check-up four months later from 44 to 33.
Then we hit 2020. At Angus’s next check-up he had grown 7cm and was already needing a new brace! His in-brace curve had progressed to 45, but his brace was not working effectively due to his growth, so we were hoping to see this change with a new brace. In March when his new brace was ready, his scans showed that his curve was now 56 degrees and that his brace was no longer going to be effective. We were told that he would need to have the surgery – however this was the day elective surgery was closed down due to the Covid-19 pandemic and so he would continue to wear his new brace until such time as surgery would become available again.
We were expecting the operation to take place in the winter of 2021, but suddenly things progressed very quickly and we received notification that the surgery was booked for October 2020. Then it got brought forward to September. It was all a blessing in disguise in some ways – the surgery was booked for the last day of term so he would spend the school holidays recovering and then return to school early in the term, that way not missing out on too much school time – it was Year 6 and so a special time for him. We were ready. He had started to feel some pain in his back when he was playing cricket and his curve was looking really obvious.
We met the surgeon a week before the operation where he explained what he would be doing during the operation and what they hoped to achieve. We could ask any questions regarding the surgery and what Angus’s life would look like post-surgery. I was relieved to hear that he would still be able to play cricket and that his growth would not be affected too much – what he would lose in height growth due to his spine being fused, he would gain from the operation by being straightened out.
Surgery day arrived – we were at the hospital very early. We checked in and then were taken to the ward where he changed into a hospital gown and had all his details checked by the nurses. Then we were taken through to the operating theatre where we met the anaesthetist and people assisting with the operation. It was fairly daunting, and Angus was very quiet, but very brave and everyone that we dealt with was so lovely and caring. It made the whole experience much easier. It was hard for me to watch my little boy being wheeled away for major spinal surgery, but I knew he was in good hands. They rang me 3 ½ hours later to say the surgery had gone well and he was now in recovery. I couldn’t believe it had gone so fast! I had to wait quite a while before I could see him as he took some time to wake up. Finally, I was led through to the ICU and there was my boy with tubes coming out of him and an oxygen mask on his face. He was very groggy when he woke up and his face was quite swollen from being face down for the operation. He was heavily drugged for the pain. It was quite scary for him waking up in a strange place with all these people around him, but they were all there for his care. I spent an uncomfortable night in a chair beside his bed. He was checked every hour to make sure he could still feel his fingers and toes. I saw his first X-ray early the following morning where we could see the titanium rods and all the screws and his now amazingly straight spine. It was incredible! I was able to see the actual wound when they removed some of his tubes – it was very long- 300 stitches through all the layers! Later that morning we were transferred from the ICU to the ward.
He was on a drip for Ketamine and had a button to administer Hydromorph when the pain got too much. His eyes were out of focus for a while so it was hard to watch tv. He slept a lot and ate a little. Nights seemed to be the worst for pain and being uncomfortable – he couldn’t move himself so I had to get up and reposition him every few hours. It was hard. The day after he was moved to the ward, the physio came and sat him up and got him to move over on the bed. I couldn’t believe how tall he looked. He didn’t feel well that day – the drugs made him feel hot and icky. They stopped the Ketamine in the morning and by the afternoon, the button was gone too. He was now on Palexia tablets, Panadol & Nurofen . With the heavy drugs gone, he started to eat better and the physio got him up and walking. He was really anxious about the pain, but he did it and each time he did, it got easier.
He was quite bored in hospital as he got tired reading and there were limited movies to watch on the TV and the iPad was too small. He really wanted to go home, but we couldn’t until he was going to the loo properly. Once that happened, the physio said if he could climb 8 steps, he could go home. Angus showed great strength and determination once he heard that news and was powering up the stairs the next time the physio came!
Five days after major spinal surgery, he came home and managed to climb all the stairs into our house. I was so proud of him.
The doctor had said to me that the recovery was very low maintenance, and I didn’t believe him, but it was true. The first few days were hard, especially at night. He had one night where he had very trippy dreams and the next day decided to start weaning himself off the painkillers. He would sit and read or watch TV, but he knew when he needed to move and would get up and have a walk around. For a few days he needed a bit of help going to the loo and showering – we got him a chair as he couldn’t stand for long periods. I was amazed at how quickly he was able to start moving freely and at how straight his back was. His scar was also healing beautifully.
A month after the operation, he was back at school doing half days – everyone was so happy to see him and hear all about his experience when he returned. It was lovely to see the support he had. He was not allowed to play any sport, but could swim or throw a ball around. He had his 10 week Post-op check-up just before Christmas. The doctor was happy with his recovery, but recommended regular swimming to try and loosen up his back and shoulders. Being 2020, we ended up in lockdown and isolation over the summer holidays so swimming was not an option. However, he started playing a bit of cricket on the street and didn’t have any problems with his back, so at the end of February, he was allowed to return to playing cricket. His muscles were pretty sore after each game, so we used a combination of magnesium cream and Voltaren to try and ease the pain. Six months is a long time with not much physical activity. He has a whole new bowling action as he is not compensating for his twisted back and being taller and straighter should make him faster! He is still not allowed to play any high impact or contact sports, but it is almost as if he never had any form of surgery! He has healed amazingly well and continues to grow tall and straight.
Angus is not a man of many words…
-How did you feel when you first got your brace? Sore, uncomfortable, weird.
-How did you feel when you found out you would need surgery? A little bit anxious.
-How did you feel when you woke up after the operation? What do you remember? I thought I was at home and then I realised I wasn’t. It was really hard to talk and get my mum to understand me (we laugh about it now.) I kept falling asleep – she read the first chapter of the same book to me three times because I couldn’t remember what happened. I was sore.
-What was it like the first time the Physio made you stand up and walk? Scary and sore, but it eventually felt better to be moving.
-What do you remember about being home? I got tired really easily. Sore.
-What was it like going back to school? Tiring, but good to see my friends.
-How do you feel now, 1 year later? Fine. Happy I had the surgery and don’t have to wear a brace. Happy that I am not in pain.
PS: At one of Angus’s post op check-ups in 2021, we noticed that the lower half of his spine was starting to curve, so he was put back in a brace to keep it stable until he stopped growing. In mid 2023, after having x-rays of his left hand to see the growth plates, he was finally told that he had stopped growing and could stop wearing the brace – forever! He is 6ft tall and straight.