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Old 28th January 2014, 10:17 AM
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tonibunny tonibunny is offline
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Default Re: New to forum,daughter getting surgery

We should agree to disagree this is why I believe one shouldn't wait to have a 6 year old with a 60 degree curve treated:

- as a preadolescent with a 60+ degree thoracic curve, her lungs will have started to be affected. Even if she does not notice this yet, lung function is already going to be decreased. The aim of treatment is to prevent this deterioration in lung function, which is much more serious than it is for adolescents at this age because the lungs are still developing and there is a risk of Thoracic Insuffuciency Syndrom if the curve is not controlled. A large curve can prevent the lungs from developing properly, something that cannot later be reversed.

- we already know that her curve is progressing rapidly. It would be a mistake to wait until the curve is bigger, not only for the reasons above, but because it is far more difficult to correct a larger curve than a smaller one - especially in younger children, whose curves tend to stiffen up. Young kids with stiff, large curves often require treatments that are more invasive and are more difficult to tolerate, such as halo traction. Larger curves sometimes cause the ribcage to become very deformed, requiring a painful procedure called a Costoplasty to try to reshape them.

- this child has already been accepted for surgery by Mr Lehovsky, who is one of the most experienced surgeons in the UK. He is very well-respected. Lucy's mum could certainly seek a second opinion if she wishes, but pretty much all of the consultants would agree that a 6 year old with a progressing 60 degree curve requires treatment ASAP. This isn't a grey area or a borderline case.

There is one treatment that could be used instead of surgery, and that is serial plaster casting. However, this treatment is not usually offered for older children in the UK anymore and it is not effective for everyone anyway. The rods are seen as a much better solution as they are easier to tolerate and do not restrict the child so much, despite the need for surgery to install them.

The choice really is between having surgery now and getting a good correction, allowing Lucy to continue living her life without noticeable problems, or waiting a while until she has noticeable problems which may be irrreversible and having surgery which may not be able to correct her spine so well. I would not wait.

I myself grew up with a large curve (62/40 degrees at the age of 6 months) before growth rods were invented. I went through casting until I had fusion surgery at ten, but my curve was so stiff I underwent weeks of halo-tibial traction. My lungs were never able to develop properly and my 80 degree thoracic curve could only be reduced to 45 degrees, leaving me with a large residual deformity. Had growth rods been invented back then I could have had this treatment when I was a lot younger, and I probably could have avoided these problems.

Apologies for all these posts, Lucy's Mum, I hope you find reading both sides of this discussion to be helpful
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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Old 28th January 2014, 12:03 PM
Aly123 Aly123 is offline
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Smile Re: New to forum,daughter getting surgery

Hiya guys,

My daughter had her magnetic rods done in July 2013 at the age of 6. She was initially diagnosed in December 2010 and we were told that she would require surgery ASAP! As her curve was about 65 degrees. Anyway we waited and waited and two and a half years later did she have her operation! Her curve was now 105 degrees, anyway the point I am trying to make is that we had to wait that long for a date, only got one after I complained to the hospital management about the delay!! If you are given a date for the op then go ahead! Mummy2lucy, there are risks with any type of operation, it's the duty of doctors to tell you beforehand, we can't go on thinking what if? I am saying this from past experience, my daughter has also had 2 liver transplants and can't begin to tell you what she's been through!(and me!) the spinal operation itself outweighs the risks of any unforeseeable problems and you have to think positively! I am sure everything will be ok!
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Old 28th January 2014, 08:25 PM
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whitbrit whitbrit is offline
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Default Re: New to forum,daughter getting surgery

I'm not saying your opinion is wrong. I understand your point of view and I understand everything involved. I'm just trying to give my opinion from the other side. Both of our opinions are valid and it is up to here. I just wanted to point out that you always have options. You never have to do what the doctor says if you aren't comfortable with it. You should never feel forced into anything. My opinion is to wait but that's only one side of the coin. It helps to see both sides when you have a big decision to make. Whatever she chooses I hope all goes well.
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Old 29th January 2014, 11:08 PM
F's mum F's mum is offline
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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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Old 1st May 2014, 07:25 AM
Mummy2lucy Mummy2lucy is offline
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Default Re: New to forum,daughter getting surgery

Hi everyone and thanks for the differing opinions it's good to get all sides.well I'm afraid we can't really leave surgery and we have a good surgeon in Mr Nordeen at Stanmore and Lucy is going to hospital today to get her rods fitted tomorrow.i will post an update after to let you know how it goes
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