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  #1  
Old 23rd January 2014, 10:30 AM
Mummy2lucy Mummy2lucy is offline
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Default New to forum,daughter getting surgery

Hi
I am Lucys mum she is 6 years old and has a curve that has progressed 10 degrees each year of her life
she is now at the magic 60 degree number and we are waiting for surgery

We have opted to use Mr Nordeen at Stanmore hospital and also opted for the magnetic growing rods so anyone with information on that would be be much appreciated

I have been told by someone that surgery to the back or any surgery in the prone position can cause the patient to go blind and I have to say this has really freaked me out to the point that I feel like backing out of the operation

Right now although Lucys curve is 60 degrees she has no problems whatsoever and she hides that curve so well you would never know it was there

she is an active normal six year old who loves horse riding,ballet,swimming and I am so worried that this surgery is going to ruin her life
I wish i could post pictures of her curve and how she presents with it but for some reason it says I cant post attachments

Is there a reason why I cant post pictures? Is it because I am a new memeber?

I am dreading the surgery and even though I am told that I am in the best place world wide I still cant sleep and am in a total state of panic

I feel like I am fixing something that isnt yet broken
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  #2  
Old 23rd January 2014, 10:59 AM
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tonibunny tonibunny is offline
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Default Re: New to forum,daughter getting surgery

Hiya, welcome to SSO

I'm sorry to hear that your daughter is facing surgery. We have a few other parents whose children are going through magnetic growth rod treatment at the moment - I will look for the revelant threads for you.

In order to post pictures you need to host them somewhere first. This post explains how to do it.

Hope that helps!

Toni xx
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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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Old 23rd January 2014, 11:01 AM
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tonibunny tonibunny is offline
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Default Re: New to forum,daughter getting surgery

Aly123 and Zainab (magnetic growth rod treatment in Birmingham, UK

Various parents discuss magnetic growth rods
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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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Old 23rd January 2014, 05:32 PM
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GillyG GillyG is offline
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Default Re: New to forum,daughter getting surgery

Hi there

I ran a poll a little while ago to gauge members opinions on magnetic growth rod surgery for the Complex Spinal Surgery Clinical Reference Group (of which I am a patient representative) and I linked several articles for people to have a look at before voting, which might be of interest to you:

Journal of Bone & Joint Surgery article

Summary of evidence - IMAST abstracts

Lancet article

Spine 2013 study

2013 pulmonary function study

Thaine Marston SAUK article

MAGEC fact sheet

MAGEC growing rod safety & effectiveness profile

With regards to issue of blindness caused by being prone for several hours during surgery, this is a very, very tiny risk and not one we have encountered on this site despite having had literally hundreds of people who have gone through this surgery. I think I remember someone reporting blurred vision for a few days post-op and someone (not sure if it was the same person or not) having some slight swelling of the face, but nothing more serious than that as far as I can recall.

I hope you find the site useful and supportive, we have a wealth of experience of all ages here and everyone is very friendly and helpful
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  #5  
Old 23rd January 2014, 08:33 PM
Mummy2lucy Mummy2lucy is offline
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Default Re: New to forum,daughter getting surgery

Thats given me some good reading

Thankyou for your replies

I am understandably very worried right now as I thought we had a good couple of years before surgery and this has all happened so fast
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  #6  
Old 23rd January 2014, 11:11 PM
Angiejo Angiejo is offline
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Default Re: New to forum,daughter getting surgery

Hi, welcome to the forum.

My daughter is scheduled to have growth rods inserted in a few weeks. I noticed the curve in Dec12 until, saw the GP, and had a number of referrals. Although we are in 2014 the time has come around quickly.

It has been a bigger concern now as we drawer closer to the operation. When any child goes into hospital for surgery is can be difficult but is magnified when its your own.

Being armed with information so you can be informed to help the decision making process will make a big difference. This forum is great and will provide a lot of what you need alongside information from the health professionals.

Its good to hear your daughter has no problems despite the curve. That's great news. Remember, your not alone despite how it feels right now. Keep talking and asking questions.

Hope this helps x
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  #7  
Old 27th January 2014, 01:25 PM
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whitbrit whitbrit is offline
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Default Re: New to forum,daughter getting surgery

I understand your worry. If she isn't having any pain or problems then you don't have to go through with the surgery. You can always put it off for awhile. Since she is only 6 and already at 60 degrees you can be pretty much guaranteed that it will get worse and require surgery at some point. You never have to do the surgery if you don't want to. I always waited until I couldn't wait anymore. It's up to you but if she is doing fine I would try to wait. She is only 6 and has lots more growing to do . Good luck with whatever you choose to do. Whatever decision you make will be the right on. Don't feel pressured one way or another and make sure you are absolutely sure about what you choose.
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Old 27th January 2014, 03:12 PM
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tonibunny tonibunny is offline
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Default Re: New to forum,daughter getting surgery

I disagree with Whitbrit I'm afraid. In cases of progressive infantile or juvenile scoliosis it is dangerous to proceed without treatment - and in the UK the best treatment available for a child of this age, with a rapidly progressing curve of 60 degrees, is growth rods.

I would NOT put the surgery off as you would only be delaying the inevitable, and it is best to prevent that curve from getting much bigger. The smaller the curve, the better the chances of a good cosmetic correction.

NB the surgery that younger children have does not hinder their growth, Whitbrit, as they have special "growth rods" which remain in place until they are tall enough for a fusion surgery. Scoliosis in younger kids is very different to the typical cases of Adolescent Idiopathic Scoliosis.
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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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