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  #31  
Old 26th November 2011, 07:18 PM
Lucy S Lucy S is offline
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Default Re: Maddy's Stryker Frame Experience

A tough few days!! God, I give up. Well done to Maddy, Rachie & the rest of the family. x
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  #32  
Old 1st February 2012, 07:13 PM
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Sandra2e Sandra2e is offline
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Default Re: Maddy's Stryker Frame Experience

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Originally Posted by Rachie View Post
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 didnít. Particularly as Maddy doesnít 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 Ė 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 couldnít 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 didnít 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 didnít choke although it was very messy!

It was only during the last four days of traction that it seemed any progress was made regarding Maddyís 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 didnít 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 wasnít 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!


Oh My god, Have just read all this and I just can't believe how much Maddy has been through, it sounds awful what she went through, great she has come on and grown taller, but obviously (as I know from totally different surgery I lost 2 st) but my god she went through so much. I just hope all will turn out so much better for her now. I know that one day Karen will no doubt want costoplasty for her rib hump but they are all saying 'when shes older, when finished growing she more able for this HUGE surgery.

To think what all these poor things have gone through and still have to is just heart breaking.

I hope Maddy is doing much better now.

love Sandra & Karen
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  #33  
Old 11th May 2012, 11:32 AM
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Rachie Rachie is offline
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Default Re: Maddy's Stryker Frame Experience

Well it's one year ago today that Maddy went on the Stryker Frame. She continues to put on weight quite slowly, but she's eating like a horse so I'm not concerned. She said they were measured at school a couple of weeks ago and she was 154.2cm which is 5cm taller than she was when she was discharged! I find this astonishing and she says she wasn't wearing shoes, I will have to get my tape measure out and have a check!
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Mum to Maddy aged 14. Maddy is a patient at Great Ormond Street Hospital and had a growth rod inserted in November 2007. In March 2011 the growth rod was removed because the curve became too strong. In May 2011 Maddy had anterior release, 2 weeks traction on a Stryker Frame and then spinal fusion.
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  #34  
Old 11th May 2012, 11:34 AM
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Default Re: Maddy's Stryker Frame Experience

Wow Rachie, she's done so well, you must be proud xx
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I'm Tiff, I'm 17, my consultant's Mr Gibson at RNOH Stanmore and I was diagnosed in November 2011 and I had my spinal fusion October 3rd 2012 and am now fused T2-T11 with amazing correction (60T/40L to 30T/40L).
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  #35  
Old 11th May 2012, 11:50 AM
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tonibunny tonibunny is offline
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Default Re: Maddy's Stryker Frame Experience

Go Maddy! She's brilliant, and so are you Rachie
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37 years old, diagnosed with infantile idiopathic scoliosis at 6 months old with curves of 62(T) and 40(L) degrees. Casting and Milwaukee braces until surgery at 10 - ant release/pos fusion T1-T12, halo traction. Post op cast and then TLSO. Further surgery at 18 (ant release/pos fusion extended to L3 to include lumbar curve, costoplasty) and 25 (another costoplasty). Fusion extended to L4 at 33 (XLIF with 4 pedicle screws and two short rods). Pre-op curves: 76(T) and 70(L). Post-op curves: 45(T) and 35(L). Diagnosed with Ehlers-Danlos Syndrome aged 34; scoliosis almost certainly due to this rather than being idiopathic.
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  #36  
Old 11th May 2012, 05:50 PM
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GillyG GillyG is offline
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Default Re: Maddy's Stryker Frame Experience

She'll have lovely long legs
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  #37  
Old 16th May 2012, 12:35 PM
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Sandra2e Sandra2e is offline
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Default Re: Maddy's Stryker Frame Experience

oh Well done both of you, this makes it all worth while........ keep going the way your going, thats great
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Sandra mother to Karen diagnosed with scoliosis at 8 yrs first Spinal Fusion Dec '09 12 yrs, Jun '11 section of rod detached from spine, had to be removed. April '12 had surgery to remove all metal work from her spine due to constant back pain Jan 13 Costoplasty to remove some prominent rib hump.
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  #38  
Old 6th July 2012, 03:32 PM
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Rachie Rachie is offline
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Default Re: Maddy's Stryker Frame Experience

Just to update this thread - Maddy had her one year check on Wednesday. All is good and she doesn't need to be seen for another year. I was concerned about her shoulder blades "winging" but they are within normal range for her age (children's shoulders can naturally do this anyway). The only point the Fellow raised was that she needs to put on more weight as he could feel her metalwork when he examined her back and it's this lack of muscle/fat that makes her lumps and bumps look more obvious too. She's not seriously underweight but should put some effort into putting more on.
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Mum to Maddy aged 14. Maddy is a patient at Great Ormond Street Hospital and had a growth rod inserted in November 2007. In March 2011 the growth rod was removed because the curve became too strong. In May 2011 Maddy had anterior release, 2 weeks traction on a Stryker Frame and then spinal fusion.
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