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Old 29th January 2014, 11:08 PM
F's mum F's mum is offline
Join Date: Mar 2012
Posts: 78
Default Re: New to forum,daughter getting surgery

Hi Lucy's mum. Welcome to the site. Sorry your little one is facing surgery, it is a daunting prospect for any parent. My little girl had surgery for growth rods last April aged 5. Prior to this she was serial plaster casted, where the cast is changed every 3 months under general anaesthetic as they yank them about a bit to do it. The cast were doing a great job at keeping the curve stable but unfortunately Frankie's lung kept partially collapsing whilst in the cast and the decision was made t leave her without one for a while and see what happened. Her curve then progressed quickly and a ct scan showed that her spine had rotated in such a way that her bronchus intermedius airway had almost been flattened by it. A bronchoscopy then showed that they couldn't even get into her right lung to check it was OK.
The decision was then made for growth rods, originally due to get magnetic ones but due to Frankie's high possibility of MRI's she got Davies Dominoes instead which are meant to self lengthen. So far they haven't so she needs a lengthening and possible change of metal work.

The main thing I have found is that she is just so so much healthier having had the surgery. You feel awful about it when they are first recovering and wonder if you did the right thing by them. But after the first few days the progress they make is amazingly quick. But the affects have been amazing. I bet you will notice a difference even if you think she has no effects from the scoliosis.

It's so great that you have a chance for the magnetic rods too as this will make the journey until final fusion so much easier for her. I definitely think that surgeons do not suggest surgery for little one's lightly so they must think it necessary.

Please keep us posted and I hope that everything goes well.
Rachael xx

X-ray of F's corrected curve. Diagnosed Feb 2012 41 degrees. Upon casting july 2012 curve had progressed to 47 degrees with compensatory curves of 28 above and 36 below. Due to have magnetic rods inserted in April as Main curve has reached 58 degrees and compensatory curves over 40. Didn't have MAGEC rods in the end as has possibility of MRI's in the future due to having NF1. So she has sliding growth rods along the lines of Davies Dominoes, they haven't slid on there own so having 6 monthly lengthenings.
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