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  #1  
Old 2nd August 2014, 07:57 PM
LORRA022 LORRA022 is offline
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Join Date: Dec 2013
Location: Ireland
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Default Magnetic Rods - Delay in Treatment- Risks/Complications

Hi everybody,
My daughter who is 12 shortly is on a waiting list for magnetic growing rods at Crumlin Hospital and we have being informed that her curvature is now at 74 degrees.

Due to long waiting lists at the hospital her surgery could be delayed till November/December 14 or later.

Can anyone explain to us the risks/complications associated with this delay. Any information would be very much appreciated.

We are now considering getting a second opinion from Dr. Noordeen and costs associated with getting surgery done in the UK.

Also has anyone had surgery done by Dr. Noordeen for growing rods?

Any advice is most appreciated.
Lorraine
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  #2  
Old 4th August 2014, 07:53 AM
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Rachie Rachie is offline
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Join Date: Jan 1970
Location: Kent
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Default Re: Magnetic Rods - Delay in Treatment- Risks/Complications

Dear Lorraine,

If you are getting a second opinion Mr Noordeen is your man. My daughter used to be under him at GOSH. He is a lovely man, very easy to talk to, answers all your questions and (most importantly) has the most experience of magnetic rods in the UK.

Is your daughter particularly small for her age? 12 seems old for any type of growing rod in girls as doctors tend to want girls fused before then. My daughter was 10 years 11 months when she was fused. She had the traditional growing rods prior to that as the magnetic ones were still being developed when she started her journey.

In terms of complications of delaying, these would be individual to the child so it is hard to generalise. As a 7 year old my daughter's curve was very flexible but as a 10 year old it had gone stiff. One thing I do know is you should trust your instincts as a mother. Pursue all avenues until you find a consultant you trust and whose treatment plan you feel happy with. That's what we did and it involved changing hospitals/consultants.

Best wishes to you on your journey.

Rachie x
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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 4th August 2014, 11:53 AM
LORRA022 LORRA022 is offline
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Default Re: Magnetic Rods - Delay in Treatment- Risks/Complications

Hi Maddy,

My daughter is 4ft 6". She is still quite immature and is pre-menarchal. Her tri-cartilage are open and she has reached the stage 0. She has been noted to develop increasing shoulder asymmetry and thoracic asymmetry and also some left anterior costal asymmetry as well.

We are extremely happy with our surgeon but the waiting time to get surgery could be December. I am afraid of the complications risks involved in waiting.

From my own research when a child's surgery is delayed until they hit a 70 degree curve known as a severe preoperative curve, they are subject to a longer surgery, blood loss, more fused vertebrae, double the blood transfusion risk and a 40% longer recovery time.

Because of her height and the potential for growth, our surgeon is recommending the growth rods.

The waiting for a surgery date is extremely stressful and knowing that her condition will deteriote even further is prompting us to go to the UK.

Thank you Mandy for your reply.
Lorraine
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  #4  
Old 4th August 2014, 01:32 PM
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Rachie Rachie is offline
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Join Date: Jan 1970
Location: Kent
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Default Re: Magnetic Rods - Delay in Treatment- Risks/Complications

Dear Lorraine,

I know the awfulness of having to wait. Scoliosis consumes your thoughts. I do understand. The reality is, even if you could see Mr Noordeen next week, it would be very unlikely he could operate before the November/December you are currently looking at.

Statistics can be scary. Let me tell you my story. Maddy's curve was around 90 degrees when she had her growth rod inserted at age 7. You can read about it here http://www.scoliosis-support.org/showthread.php?t=4831. There were no complications to the surgery and she was home a week later. When she was fused her 'before' curve was greater than 90 degrees as her spine had stiffened and the growth rod failed. During that surgery any blood loss was returned to her with cell saver so no transfusion was required. Her spine is now almost straight and she had her huge rib hump corrected by costoplasty during the same surgery. An incredibly stressful journey, but a very good outcome. Please don't be frightened by statistics.
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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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  #5  
Old 9th August 2014, 10:55 PM
LORRA022 LORRA022 is offline
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Default Re: Magnetic Rods - Delay in Treatment- Risks/Complications

Dear Rachie,

Thank you so much for your reply. I am so pleased that your daughter is doing so well.

I got a call this week from our surgeon to say that he hopes to see our daughter very shortly and has re-assured us about our concerns. Her surgery will be acted on very soon but no date given yet. So I am a little less stressed now knowing that I don't have to travel to England.

I will keep you updated when we move closer to a surgery date.

Kind regards,
Lorraine
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