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Rachie
23rd January 2007, 09:41 PM
It's great to finally find a website like this!
My daughter Maddy is 6 years old. She was diagnosed with a 70 degree curve when she was 4, although she obviously had some deformity before this. Whenever I said to my husband that we should get her checked out as her shoulders were uneven he said I was worrying about nothing.
We saw John O'Dowd at Guys, who was wonderful. Amazingly, he thought the curve should just be monitored with x-rays for a while to see what was happening. We saw him three times, six monthly, and each time he said it wasn't progressing and to keep monitoring it. Then we were due to see him in June 2006 but the clinic kept being cancelled. We eventually went for the clinic in November (11 months since the previous x-ray) to be told that John O'Dowd had retired and that Sophie would need surgery to insert growth rods as the curve is now 75 degrees. The new consultant is Tom Ember. To contemplate surgery was such a shock for us and we are now waiting for a second opinion with Mr Noordeen at Great Ormond Street. We have been told we will be able to transfer Sophie's care to him if we want to.
Does anyone have any experience of Mr Ember and Mr Noordeen? Or growth rod surgery? :help:

GillyG
23rd January 2007, 09:59 PM
Well, I'm afraid I don't know of either consultant as I'm from 'up North'! Also, my scoliosis was left untreated as a teenager and I didn't have surgery until last year, aged 49, but from what I've read, the growth rods are a bit like a telescopic pole which can be adjusted as the child grows. I'm sure there will be other members who can be a lot more help than this, but I just wanted to welcome you to the site anyway :wave:

I can't quite understand why a 70 degree curve was left unbraced/uncast in the first place, was the original consultant a specialist in the field of spinal orthopaedics?

I hope you get some answers from your second opinion, and don't forget - we're here to help in any way we can, even if it's just to listen, although many members can give you the benefit of a great deal of knowledge too. :-)

Gilly x

sins
24th January 2007, 10:27 AM
Hi Rachie,
Some members here have had surgery with Mr Nordeen, both in GOSH and Stanmore.It appears that with a 75 deg curve inserting growth rods is a very appropriate treatment and is important to allow her spine to grow and not compress her lungs as she grows.
These rods can be lengthened via a minor surgical incision every few months and most children do very well with them.
The decision to tansfer rests with you really, depending on your location and the waiting lists.Certainly a second opinion is always a useful thing and if you feel more comfortable with Mr Nordeen and the set up at GOSH, then certainly transfer.I'll try and find you some links to growth rod surgery.
Sins

ELLA22
24th January 2007, 01:34 PM
Hi Rachie
Glad that you have found this site. I've not been on long but it's great to speak to others going through the same thing. My daughter is 3 and has congenital scoliosis mainly in the cervical area and we are waiting for more x rays in March to see they will be doing. I'm sure that somebody will answer any questions you have!
It's very scary thinking about the surgery. I know exactly how you feel. My husband tells me not to worry until we have a date but that is easier said than done!
Ella x

Amazed Jean
24th January 2007, 07:51 PM
Hello and welcome. It sounds to me like you were luckie that your first doctor retired. It is unconscionable for a medical professional to leave a child with that large a curve - what in the hell was he thinking? Children with curves that big turn into adults with larger curves and more problems. I know you are now headed in the right direction. If something doesn't seem right keep asking questions. When it all boils down to is that you are your child's best health advocate.

andrea
25th January 2007, 10:23 AM
Hi Rachie, and welcome to SSo. There is so much in your post that is familiar. My daughter Erin was diagnosed at 20 months with a 62 degree curve. Like you, I suspected something was wrong before then but always thought i was being paranoid and didn't have a clue about scoliosis. Erin's curve was rather progressive (her rib hump seemed to appear overnight) and she was placed in a cast at RNOH immediately. Initially they managed to get the curve down to mid-30s, but unfortunately it went back up again. She is 4 now, and it looks like growth rod surgery is looking like a very real option for us too.

I too, can't understand why your daughter's curve was watched rather than managed, and I am amazed that is hasn't progressed more than it has. I was told that Erin's would have been over 100 within a year if we hadn't acted when we did. I can't recommend the RNOH enough. Definitely see Mr Noordeen. I don't have any experience of him myself, but the great thing about the hospital is that you will have access to many professionals, all of whom have a huge amount of experience with this sort of curve and surgery. They may well her in a cast. I was at RNOH yesterday and a boy of 7 had just had his first cast applied, so she is certainly not too old.

Feel free to ask any questions and we'll do our best to help

Andrea
xx

Rachie
26th January 2007, 09:35 AM
Hi everyone, thanks for your support.

The original consultant was one of the top spinal surgeons in the country. He was certain that bracing would not be effective because it is quite a high curve. He was happy to watch it for a while and, as there was no progression for over a year, he was saying that surgery could wait. We always knew surgery would be required, we just didn't know when. So the shock was seeing someone new who wanted to operate straight away.

Does anyone have a child with growth rods at the moment? I have no idea what life is like for them. Is it hard to tell they have them or do they move strangely for example. I just hate to think of my girl with a back full of metal.

Rachie x

tonibunny
26th January 2007, 11:34 AM
Hi Rachie,

High curves used to be treated with the Milwaukee brace, which has a metal neck ring - the usual corset-style braces don't reach up high enough. I don't think that this type of brace is used in the UK anymore though. It's very visible, and difficult to wear.

I wore a Milwaukee and plaster casts as a child and personally, I would have jumped at the chance of having growth rod surgery instead of having to wear the brace!! :-) I had my first spinal fusion when I was ten, and after that I was able to do pretty much anything I liked without being restricted by casts or braces. I would imagine that it's the same for a child with a growth rod in.

I doubt very much that anyone would be able to tell if a child had a growth rod in - no-one could tell that I had a Harrington rod in. I certainly didn't move strangely! I've met some children at the Royal National Orthopaedic Hospital in Stanmore who've had the growth rod surgery and I couldn't tell they'd had surgery at all. Young children bounce through surgery and the subsequent procedures to lengthen the rods are relatively minor surgeries.

So, please don't worry :-)

andrea
26th January 2007, 01:51 PM
As far as I know, there are no children on here with growth rods at the moment. I've met a few during my frequent trips to RNOH though, and all seem to do really well with them. Apart from the scar, I'd say no one will know that she has rods in her back. She may initially need to wear a cast or brace to protect her back, but i understand that this is a short term thing.

There was a documentary on about a year ago featuring a 6 year old girl having growth rods inserted and she did brilliantly. There is a webcast of the surgery on srs.org if you're interested. I tried to watch it but couldn't, and you may prefer not to watch. I just thought i'd let you know it was there.

Hope you get your appointment for Mr Noordeen through soon.

Andrea
x

tonibunny
26th January 2007, 02:16 PM
I should add that Mr Noordeen is a very experienced and well respected surgeon who has been around for years - I remember him treating kids at Stanmore 20 years ago :-)

Little Ali
28th January 2007, 06:54 PM
Hi there! :welcome2: :wave:

snowy24040
28th January 2007, 09:33 PM
hi im sharon courtneys mum im new to the site as well im waiting for an appointment any day for courtneys growth rod surgery.we first went to the doctors when courtney was 17 months old its been a long road appointments allways being cancelled we waited 8 months for mri results and thay showed a large cyst growing on her spine it another 9 months before she finally got the surgery to remove it .all the time the curve was getting worse.its like they dealing with a broken arm.i ring the consultants secretarys direct until i get the answers .

Rachie
29th January 2007, 07:28 PM
Thanks Tonibunny and Andrea, you have made me feel much better about things. I guess my main fear is that of the unknown, so the more I know the better. I've just had a date for us to see Mr Noordeen at GOSH which is 16th Feb, so we should get a better idea of when things are going to happen then.

8) Rachie x

andrea
29th January 2007, 07:38 PM
That's good news Rachie - not long to wait now. As you say, the waiting, watching and wondering is the worst situation to be in. When Erin was first diagnosed I couldn't bear not knowing what was wrong with her and what her prognosis was so we sought a private consultation. It was one of the best things we did as it got us referred to RNOH and we haven't looked back. I'm very interested to see what treatment Mr Noordeen recommends for a high curve, so please come back and tell us how you get on.

Take care
Andrea
x