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  #16  
Old 7th June 2011, 06:38 AM
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Amazed Jean Amazed Jean is offline
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Default Re: Maddy's Stryker Frame Experience

Absolutely Amazing Rachie and Maddie!!
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I am 61 years old and the resident SSO fossil. I live in Oklahoma,USA with my husband Allen. We have one daughter Jae and she has three kids.Our grandkids are: Aidan is8. He's the one pictured in my current avatar. Jenna Jean is 7 and Ryan Allen is just 4 It's full time chaos here! I was diagnosed in 1965 at 14 years with Kyphoscoliosis and 2 curves measuring 68 and 63 degrees. My last measurements were in 2004 at 155, 88 and 55+ degrees. I have never had surgery or bracing so I now am on full time oxygen and use a Non Invasive Ventilator at night. at night.
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  #17  
Old 7th June 2011, 11:45 AM
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Default Re: Maddy's Stryker Frame Experience

wow thats an amazing experience you both been through, well done to you both. Wishing maddy a speedy recovery, what a brave little girl she is, and hugs for mum aswell xx
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  #18  
Old 8th June 2011, 12:53 PM
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Default Re: Maddy's Stryker Frame Experience

My goodness- well done- I can't imagine what that must be like to go through as a patient and as a parent.

Hope it is all plain sailing from now.
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  #19  
Old 11th June 2011, 09:22 AM
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Default Re: Maddy's Stryker Frame Experience

Godness me so much for someone so little..... She must have the courage of a lion, I wish I was so brave. xx
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Mum to Bryony 16, due to have anterior spinal Fusion at Great Ormond Street Hospital on 21st June 2011.
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  #20  
Old 18th August 2011, 05:41 PM
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Default Re: Maddy's Stryker Frame Experience

Well it's 3 months on and I thought I would write an update for anyone embarking on the same journey.

Maddy was 33kg before surgery and I'm guessing she went down to about 27kg after her surgeries and her subsequent sick bug at 2 weeks post op. She looked skeletal, it was frightening. She is now 30.5kg and looking much better. I find if I make her have breakfast (even if it's just a small bowl of cereal) it seems to kick start her for the day and she ends up grazing all day. She still looks skinny but sooo much better!

She is back to her old personality - downright rude sometimes! But generally her old happy self - thank God! For weeks she said she hated her body and wanted her old one back, but now she is pleased with it.

For the first few weeks she felt like she had bricks in her back but now her back feels completely normal. In fact she has had no back pain since about 3 weeks post op!

The marks on her forehead from the halo, have faded and are less noticeable, particularly when she remembers to put Bio Oil on them. They are still bigger indentations than I was led to expect but the Fellow said although the skin has healed on top, the fat below it takes longer, so they may plump up a bit more over time.

She had a lump on the back of her head early on when she was on the frame and it went down slowly. But a scab formed which became infected at about 10 weeks and, although the infection has now gone, she has been left with a bald patch on the back of her head. Luckily it is underneath some hair so it can't be seen, but the GP said it may take years for the hair to grow back! The annoying thing is no one really seems to know what the lump was in the first place.

She sees a physio every 3 weeks or so and is doing exercises at home (when we remember!) to strengthen her legs and arms mainly. After so many years of being wonky her body has got by without using certain muscles, particularly her hips which cause her walk awkwardly. We have already seen an improvement in her walking just from using these muscles.

Finally me! I would say that being at home has been much more stressful than being in hospital. When you are going through it in hospital you just go with the flow. All the staff are doing their thing and you are just there to support your child. When you get home, however, you are left to cope alone. Hubby goes back to work and son thinks life will return to how it was before you left. It was a very frightening time initially, especially as Maddy had a sick bug. It was around 7-8 weeks that she seemed back to her old self and this was the time that I began to re-live what she went through in hospital and had a good old cry at times. I think I needed to react to what I had witnessed as I couldn't at the time. I was quite low for a few weeks but am feeling pretty good now. Except I do worry about her falling and hurting herself but even that worry is becoming less. Blimey in two weeks time I will be sending her off to secondary school on the bus!

I think Maddy has done so well beause she was so young. Although it was traumatic my advice would be if your child is definitely going to need surgery then have it done as young as the surgeon thinks is possible, because they are more likely to bounce back and get on with their life.
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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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  #21  
Old 19th August 2011, 03:46 PM
Vicki Vicki is offline
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Default Re: Maddy's Stryker Frame Experience

In my experience after a while the marks on my head faded into tiny pale scars that were almost perfectly flat and with a bit of concealer (I never bothered, but we did try it one and it worked) totally vanished. Now (and since not too long after the surgery, but I'm afraid I can't remember quite how long) I struggle to point them out to people. I have a fringe now but only since the end of last year, so for years they were totally on display to the world but nobody ever noticed, and found it difficult to locate them even when I called their attention to them. I tried to take a photo but they're that pale they don't actually show up!

I didn't use bio-oil or anything like that either, so I'm sure Maddy's will disappear in no time!
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  #22  
Old 22nd August 2011, 06:08 PM
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Default Re: Maddy's Stryker Frame Experience

Maddy officially rocks !!!
She has done so amazingly well having to contend with much more than it would take to break a lesser person. That goes for you too Rachie. For anyone from the outside it is really like a whole different world, from inside it is far easier to identify true courage.
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Adolescent Idiopathic Scoliosis. Started in 1990 with a harrington rod for thoracic curve, 1995 it was removed as interferring with lumbar curve. In 1999 I had left leg shortened to pull hip down, then in 2000 the metalwork was removed. June 2010 had revision surgery, making the entire fusion t2-l5. Unfortunately in worse pain now than before
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  #23  
Old 14th November 2011, 07:30 PM
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Default Re: Maddy's Stryker Frame Experience

I've just seen this, wow Maddy! And wow Rachie too! That's amazing what you're been through, I bet Maddy's getting on fab in secondary :hug2:
Best wishes,
Tiff xxx
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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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  #24  
Old 23rd November 2011, 02:01 PM
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Default Re: Maddy's Stryker Frame Experience

Well 6 months are now up and Maddy's fusion is solid. The marks on her head from the halo screws suddenly flattened out and disappeared at around 5 months post op. Her weight is increasing, she is now just 1kg lighter than she was at surgery. She's been discharged by the physio today and here is part of a letter I received from Mr Tucker today:

"Maddy is six months following her revision surgery. She has done fantastically well from this. She continues gaining some weight and they are endeavouring to do this. The metal work is not a problem and her scars are very nicely healed. She has excellent coronal balance. She does have a degree of residual rotation in the upper thoracic spine causing asymmetry of the shoulders in an AP direction, but there is no shoulder slope.

We have discussed the do's and do not's and at this point I am very happy with her radiological appearance and I feel she is safe to undertake all normal activities."

Do you think it is safe to breathe my sigh of relief yet? After 7 years on this journey I can hardly believe we are at the end!
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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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  #25  
Old 23rd November 2011, 05:14 PM
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GillyG GillyG is offline
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Default Re: Maddy's Stryker Frame Experience

Breathe away Rachie, that sounds like great news
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  #26  
Old 23rd November 2011, 07:58 PM
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Default Re: Maddy's Stryker Frame Experience

Yay Maddy and Rachie!!!
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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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  #27  
Old 23rd November 2011, 09:31 PM
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Mustang Sal Mustang Sal is offline
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Default Re: Maddy's Stryker Frame Experience

Oh wow! Well, if Mr Tucker is delighted with how everything is and mentioned those six magic words 'safe to undertake all normal activities', then I reckon you can definitely breathe and relax a bit now

It must feel very strange to not have to think about the next hospital appointment or the next lengthening, as that's been your life for the past 7 years, but I think that now some celebrations are in order

I can't wait to hear about all the things Maddy gets up to in the future - the world is her oyster xx
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I'm Sally, 31, and I have congenital kyphoscoliosis in association with Spina Bifida, Diastematomyelia and tethered cord. Surgery to detether spinal cord and remove bone spur at Addenbrooke's in 1984 aged 3. Developed 'pes cavus' and weakness in legs, various foot surgeries between '92 and '94. Decompression of spinal cord, hemivertebrectomy and fusion L2-L4 with instrumentation by Mr Crawford and Mr Laing (neurosurgeon) in 1998 aged 17. Had two stage anterior-posterior T10 to pelvis fusion surgery on 27th February 2012 at NNUH by Mr Crawford and Mr Lutchman. Fused well but now curving over top of fusion, so facing fusion extension up to T1. Trying a brace first in order to put off surgery til next year
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  #28  
Old 24th November 2011, 03:59 PM
wildcats56 wildcats56 is offline
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Default Re: Maddy's Stryker Frame Experience

Hi Rachie What a fantastic letter I bet you were so pleased, Maddie has been amazing through it all hasnt she, kids are just so resilient. I hope she goes from strength to strength and does everything she could ever wish to so with her life. Like Sally said I bet it feels a bit weird for you not to be waiting for the next thing to happen, but now you can relax and enjoy Xmas without worrying with whats happening the following year. Take care Sue xx
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  #29  
Old 25th November 2011, 10:38 PM
Lucy S Lucy S is offline
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Default Re: Maddy's Stryker Frame Experience

That's great Rachie! Just home ourselves after another lengthening for Jake. Not as straight forward as it could be, can't wait for the day it's over for him.. Thanks again for the top tip to use talc to stop any stickiking - best advice we've ever had! x
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  #30  
Old 26th November 2011, 01:50 PM
Lucy S Lucy S is offline
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Default Re: Maddy's Stryker Frame Experience

Ooh, interesting way to spell 'sticking' - it's been few days!!
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