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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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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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  #9  
Old 27th January 2014, 04:20 PM
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whitbrit whitbrit is offline
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Default Re: New to forum,daughter getting surgery

I did not say it would hinder her growth I just said she has lots of growing left to do. I know how growth rods work. From my perspective I wouldn't put a six year old through surgery if she's doing ok. I also know the difference between adolescent and childhood idiopathic scoliosis. In my opinion I prefer to delay surgery if possible. If she is doing fine now then you can delay it. It's a big surgery and a big decision and if you have time to wait I would take it. I'm just giving my opinion. She isn't my daughter and it isn't my place to make a decision. I'm only stating an opinion because she is hesitant about the surgery and it helps to get different opinions. I have childhood idiopathic scoliosis. I've lived most of my life with scoliosis so I do have experience to draw on. Whatever you do decide I hope all goes well.
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  #10  
Old 27th January 2014, 05:10 PM
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tonibunny tonibunny is offline
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Default Re: New to forum,daughter getting surgery

Then we are on the same page my opinion is that if her curve is progressing rapidly then she should not delay having the growth rod surgery. I wouldn't put a child who is "doing ok" through surgery either - but she's not "doing ok" if her curve is progressing this quickly, even if she isn't showing any discomfort and her curve doesn't bother her. As you will be aware, large curves in very young children can deteriorate very quickly and so it is risky to leave them untreated.
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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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  #11  
Old 27th January 2014, 05:42 PM
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whitbrit whitbrit is offline
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Default Re: New to forum,daughter getting surgery

I am aware but she is being followed by a doctor and her curve is being tracked. They know how fast it is progressing and as long as they monitor her closely they can delay surgery if they choose until they see it's at point that can no longer wait. I don't see it as not treating her because they are following her curve. It's more common for rapid deterioration to occur in adolescence during growth spurts. As long as they monitor closely they will know if starts to deteriorate rapidly and can do the surgery then.
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Old 27th January 2014, 06:29 PM
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Default Re: New to forum,daughter getting surgery

I read Lucy's mum' post to mean that her surgeon has already advised that she have the growth rod surgery, and so they are waiting for that surgery to take place. If this is not the case then I apologise.

Young children's curves can and often do progress rapidly though. This is why scoliosis in younger children is generally more of a concern than the typical cases of AIS, and why these children have growth rod surgeries rather than waiting until they are older. Ten degrees in one year is itself considered rapid progression.
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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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  #13  
Old 27th January 2014, 07:07 PM
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Default Re: New to forum,daughter getting surgery

I agree that he has already said that but just because one doctor says that doesn't mean it has to be done now. I once had a doctor who said if I got to 30 degrees I had to have surgery. He left and I ended with a different doctor and didn't have surgery for more than 10 years after that. I don't disagree with what you're saying and being and 10 degrees a year is rapid but doesn't necessarily mean it has to be done right away. I was always told by another doctor that I never had to surgery if I didn't want. I also realize that with it being as far as it is she will need surgery at some point. I just prefer to wait.
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  #14  
Old 27th January 2014, 07:22 PM
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tonibunny tonibunny is offline
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Default Re: New to forum,daughter getting surgery

There are very few surgeons who would recommend fusion surgery for a 30 degree idiopathic curve. I can't think of any who would - fusion is generally indicated at 40+ degrees for growing adolescents, and 50+ degrees in mature spines.

A 60 degree juvenile curve that is deteriorating should be taken very seriously, as there is a real risk of lung compromise in younger children if the curve continues to progress (the lungs aren't fully developed until at least the age of 8) and most surgeons would agree that treatment is needed ASAP in such a case.

This isnt the same type of surgery than you had, remember. Fusion surgery should be avoided for as long as possible in preadolescent children.
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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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  #15  
Old 27th January 2014, 09:35 PM
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whitbrit whitbrit is offline
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Default Re: New to forum,daughter getting surgery

You keep saying its not the same and I know this I never said it was. I know it can be serious but if you can continue to monitor you can watch it progress and know when and if her lungs are compromised. At this point they are not compromised. I know how growth rods work. I know what they are and I know it isn't a fusion. She is not in pain and nothing is compromised so at this point she is fine. I realize she will need surgery because her curve will most likely continue to progress that doesn't mean it is necessary at this point. I know most doctors wouldn't but mine did. I'm just pointing out that one doctor's opinion is not necessarily the best.
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