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  #1  
Old 24th December 2013, 12:27 PM
Aly123 Aly123 is offline
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Smile Newbie with magnetic rods

Hiya all,
I am the mother of 6 year old little girl called zainab who had magnetic rods fitted at Birmingham Children's Hospital in July 2013. We had to wait a VERY long time for this operation. Zainab has had 2 liver transplants at BCH and so that's why they decided to implant magnetic rods, reducing the need for repeated surgery. We do not live in Birmingham but near Manchester so we were under Mr Marks at ROH Birmingham. From being diagnosed as having scoliosis to the actual operation, it took us over two and a half years and that was only because I had to write to the Chief executive so many times and ask them to investigate why I wasn't being taken seriously! Anyway shortly after they sent me an appointment for her operation. I must say, zainabs liver consultant at BCH helped me a lot! When she did have her surgery, her curve was 105 degrees! Zainab is doing fine now! Obviously she does have problems but that's probably due to her liver transplant as well! I often read the thread on this forum but never thought to join! Anyway we're here now so if I have any rants or raves, you will all know the feeling Lol!
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  #2  
Old 24th December 2013, 04:07 PM
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Rachie Rachie is offline
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Default Re: Newbie with magnetic rods

Welcome. You have been through a lot with your little one. We only have a few children on here with magnetic growth rods so we would love to hear how she gets on.
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Mum to Maddy aged 14. Maddy is a patient at Great Ormond Street Hospital and had a growth rod inserted in November 2007. In March 2011 the growth rod was removed because the curve became too strong. In May 2011 Maddy had anterior release, 2 weeks traction on a Stryker Frame and then spinal fusion.
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  #3  
Old 24th December 2013, 05:42 PM
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GillyG GillyG is offline
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Default Re: Newbie with magnetic rods

Hi there

It sounds like your little girl is doing very well despite having such a tough time of things, bless her. I'm glad you've joined us for laughs and rants, we're good at both those things
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  #4  
Old 26th December 2013, 11:28 PM
Aly123 Aly123 is offline
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Angry Re: Newbie with magnetic rods

Thanks for the replies guys!! Will keep you posted, had an appointment at royal manchester on Monday as the surgeon from Birmingham, mr marks has now 'passed' us onto manchester for the rod lengthenings. They have not done any magnetic rods at manchester so this is something new to them. Anyway, we had decided at zainabs last appointment in Birmingham that they would do the first lengthening and then manchester would do it after that as they will need to send someone to show them how to use the strong magnets!! Well guess wat, I totally forgot about this appointment on Monday and did not remember until I got a phone call asking why I wasn't there! I then explained that I genuinely forgot and told the lady that I will come ASAP! Anyway this is when I was told that someone was actually there from London to do the lengthening and he was waiting with mr oxborrow, spinal surgeon at Manchester. I was so angry at myself as this is the first appt ever that I have missed in the past 6 years and also angry with the surgeons at Birmingham to arrange all this without telling me about it! After everything I had to go through to get this surgery in the first place, and now this, I feel as though they just don't care! I myself did not want the first lengthening done at Manchester and they knew this, I also have a letter from them stating this! Sorry if I'm going on a bit, but I have been feeling so bad about all this and also angry! Maybe I'll feel a bit better now that I've let it out of my system!
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  #5  
Old 27th December 2013, 11:24 AM
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GillyG GillyG is offline
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Default Re: Newbie with magnetic rods

Oh dear, what a mess, hope you can get it all sorted out The hospital I'm under does this weird automated telephone call thing, reminding you a week before the appointment is due and asking if you are still attending, but at least it means I never miss an appointment!
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  #6  
Old 28th January 2014, 11:17 AM
Aly123 Aly123 is offline
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Default Re: Newbie with magnetic rods

Hiya

I'm back again! Well zainab had her rods lengthened last week! This was at ROH Birmingham! I went there thinking they will do a a decent amount considering its been 6 months since her surgery and its the first lenghtening! Anyway to my disappointment, they only did 1.5mm for one rod and 2.5mm for the other(yes we are talking millimetres here!!) just wanted to know is this normal?? Maybe I was expecting too much, would like to here from others about their 1st lenghtening after surgery!

Thanks xx
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  #7  
Old 28th January 2014, 12:07 PM
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tonibunny tonibunny is offline
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Default Re: Newbie with magnetic rods

That does sound disappointing Aly, but has Zainab grown much in these six months? If she hasn't then I wouldn't worry too much. The rods can't be lengthened if there isn't growth to allow for the lengthening.
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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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  #8  
Old 28th January 2014, 12:28 PM
Aly123 Aly123 is offline
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Default Re: Newbie with magnetic rods

Hi,

When zainab had this lenghtening done last week, we saw the surgeon(someone who I hadn't met before) and he just came out with these two figures! I mean how do they base their assumptions, we didn't have an X-ray beforehand nor was zainab measured, we only had an X-ray afterwards!!

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  #9  
Old 29th January 2014, 04:40 PM
emma's mum emma's mum is offline
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Default Re: Newbie with magnetic rods

Hi my daughter Emma had her rods put in last may and has her rods lengthened every 3 months.The lengthening is all done under xray so the consultant(who was her surgeon) can see whats happening.Emma is also only lengthened a couple of millimeters each time but this seems to be enough with her growth.She had her third lengthening last week but was getting quite a bit more pain in the weeks before the lengthening so have decided to do them more often maybe 1 or 2 monthly.Oh and Emma was nine when she had surgery don't know if age is a factor.
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  #10  
Old 29th January 2014, 06:13 PM
Aly123 Aly123 is offline
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Default Re: Newbie with magnetic rods

Hiya

Zainab had her surgery in ROH Birmingham under Mr Marks and because we live near manchester, we have now been transferred to Royal Manchester Children's Hospital, so any future lenghtening will be done there! Manchester do fit spinal rods but they have not done any of the magnetic ones and my only worry is that if I do have any questions, the doctor will not be able to answer thoroughly! The surgeon there is very good though! I'll have to wait and see!!!!
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