Maddy had a growth rod fitted in November 2007 when she was 7 years old. This controlled her curve adequately for 3 years but during the last year her curve worsened, her rib hump became extremely pronounced and her rod broke under the strain of her curve which had become rigid. The only way of achieving a satisfactory correction was for Maddy to undergo Anterior Release surgery (where flexibility is restored to the spine by removing the discs between the vertebrae within the curve) and to spend two weeks in traction on a Stryker Frame before Spinal Fusion surgery.

On 11th May Maddy underwent her Anterior Release surgery. Because of the size of her rib hump she also had an Internal Costoplasty which involves breaking some of the ribs to enable a cosmetically better outcome in the final surgery. When Maddy came round in the Recovery Room she found it hard to breathe and she had to have an emergency xray to see what the cause was. It was the location of the chest drain which was wrong so this had to be moved around to find the right place to effectively drain the fluid. This was painful, as was the xray as the plate had to be forcibly pushed under her back.

She slept on and off for the next 12 hours on her back, after which it was time for her first turn on the Stryker Frame. I had been told that the first turn is always the worst and it was. She was clamped in between the two mattresses screaming and when she emerged the other way up she was in agony for a good hour afterwards. One of the nurses checked her back and I was surprised at how the rib hump still looked huge and covered in bloodied dressings. I was under the impression that her back would look different after the first surgery and I was a bit worried that it didn’t. Particularly as Maddy doesn’t sleep on her back because of the hump, yet on the Stryker Frame she would have no choice but to lie on her back for half the time.

This is the Stryker Frame:

The patient wears a halo which is attached to the head with four screws – two at the front and two at the back. On two occasions the screws had to be tightened but this was not painful at all. There are also stirrup-like things which are attached at the knees with pins. The pins hurt sometimes after turning when her legs moved too close together and they had to be gently moved apart. When she came out of surgery there were about 3lb of weights at each end. Most days 1lb would be added to each end and the frame had to be turned every 2-3 hours to stop pressure sores. When she was face up the only thing she could do was listen to audio books as she couldn’t see the television, but when she was face down she could read and make things and there was a mirror that people could look into to have a conversation with her.

Being turned:

Two days after the surgery Mr Tucker came and said that the surgery had been straightforward. As an xray taken earlier that day showed a small pleural effusion he asked for the chest drain to be put on suction and then removed the following day. The blessed thing was bubbling all night, so I lay back and tried to imagine I was in a spa! The next day the chest drain did come out, after which Maddy began to feel much better. She even let one of the nurses decorate her halo.

A couple of days later we were in a routine of physiotherapy for half an hour in the morning, followed by an hour of school (one of the Hospital School teachers came and did a project with Maddy while she was facing down), followed by lunch (eaten face down) and then craft activities for an hour with the Play Specialist.

Maddy playing with the ipad:

Eating was difficult. Not only was she not very hungry due to surgery, but when she did have an appetite she would eat and feel full very quickly. You can eat on your back but she didn’t like to because she felt like she was going to choke.We did have a couple of instances of vomiting, once face down and once face up. The latter I was dreading but it was fine, the nurse helped with suction and she didn’t choke although it was very messy!

It was only during the last four days of traction that it seemed any progress was made regarding Maddy’s curve straightening out and on the last two days they added 2lb to each end instead of 1lb. By the time she was wheeled into the second surgery she had 20lb on each end! I could hardly lift them! She didn’t notice weights being added. It just goes to show what you can achieve if you take it slowly. Saying that though she did suffer pain every day she was on the frame. It wasn’t very much pain and was usually in her rib hump towards the time when she should be turned. The turning was a bit hit and miss depending on who was on duty. She was occasionally left for over 4 hours but it was usually between 2-3 hours. Her knees used to get red and sore when she was on her front but they put soft padding on them to help with that.

Thirteen days after the first surgery Maddy went down for her Spinal Fusion. This involved a further costoplasty and an awesome correction. She was discharged a week later. The only difference her time on the Stryker Frame has made to her recovery is that her knees are very weak, having been pinned in one position for so long. She has lost an awful lot of weight and has gained 11.2cm in height, so she looks very tall and frail but with the posture of a ballerina!