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  #1  
Old 23-06-2015, 11:34 PM
thebattleahead thebattleahead is offline
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Default magnetic growth rods

Hi Everyone,
My 6 year old daughter is due to have an operation on Monday for insertion of growth rods and then an op every 4 months to extend them this will go on until she is 15 then they will fuse her spine; my daughter has 15 other medical conditions and doesn't go to well with anesthetic, I am thinking of cancelling her op and taking her interstate to Melbourne where they do the magnetic growth rods that way my daughter will have one op to have the rods put in then another op when she is 15 this means 2 operations instead of 15 or 20.
What are everyone's opinions and who has had the magnetic growth rods? Can you please tell me your experience and how often you would need check ups. Thank you
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Old 26-06-2015, 10:01 PM
tracy tracy is offline
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Default Re: magnetic growth rods

Hi battlehead,


OMG! Is it this Monday? My name is Tracy and our daughter had growing rods for 4 years. She had definitive fusion last August at 13 yrs 9 months. We got a fabulous correction and couldn't be happier with the final result. This came with infection however and long term-antibiotics. 4 times a day for years. The infection would open up on scar-line and require dressing until next surgery when it would be flushed out. Im not trying to put you off, but considering your options would be my advice. Monday is only 2 days away! My heart breaks for you!

With growing rods they do lengthenings every 6 months, not 4. You can push that out to 9 depending on how growing is at the time. Theres a rapid growth time which usually goes for around 2 years (for us was around 10.5-12.5 years) then it slows down. What are The degrees involved and is there any way you can put it off another year? Theres only so many lengthenings in growing rods. Around 7, so 1 set of growing rods might not get you through till the end of growing? As far as I know we are the only ones who are on this forum with growing rods and theres none with magnetic rods. JIS is quite rare in Australia. Also to have magnetic rods...don't quote me...but you have to be eligiable. With underlying medical conditions you may meet the criteria.

Magnetic is what I would have opted for if we had the choice, but the first magnetic rods here were done after our daughter had the growing rods put in. At the end of the day we just want whats best for our kids. If that means a little more time to research your options. Then so be it. You need to be happy and well-informed going into this long journey and have 100% confidence in your surgeon. Have you spoken to your surgeon about magec rods? Ive private messaged you.

All the very best
Tracy
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Old 26-06-2015, 10:15 PM
tracy tracy is offline
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Default Re: magnetic growth rods

P.S What state are you in? As I know for sure that there's a surgeon in Sydney who is looking at using Magnetic rods soon
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Old 27-06-2015, 10:29 AM
thebattleahead thebattleahead is offline
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Default Re: magnetic growth rods

Hi Tracy,
My daughter has 15 other medical conditions, We live in Qld, The surgeon advised me the magnetic growth rods would be no good for my daughter as the break a lot easier and they are to big for my daughters little body otherwise he would of gave me a referral for Melbourne as my daughter doesn't tolerate general anesthetic very well and we have nearly lost her a few times.
The sugery is going ahead Monday morning.
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Old 27-06-2015, 10:32 AM
thebattleahead thebattleahead is offline
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Default Re: magnetic growth rods

HI Tracy,
I forgot to mention my daughter's curve is 75% so they said surgery has to be done straight away.😢😢😢😢😢😢
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  #6  
Old 27-06-2015, 12:33 PM
tracy tracy is offline
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Default Re: magnetic growth rods

Hi battlehead,

At 75 degrees its important to be done! I wonder if we have the same surgeon? Ive private messaged my details if you need to chat don't hesitate to call or e-mail. Thinking of your beautiful daughter. Be strong. The waiting is the hardest! Shes in good hands. You will have an amazing team to care for her! Its a state-of-the-art brand new hospital. Weve watched it be built over the last 5 years. Sending huge hugs your way.

Luv Tracy
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  #7  
Old 28-06-2015, 05:04 PM
tracy tracy is offline
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Default Re: magnetic growth rods

Hi there battleahead,

Just want to send our prayers and well wishes for your daughters surgery tomorrow. Let us know how it all goes. They will take wonderful care of her!

Best wishes
Tracy x
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  #8  
Old 28-06-2015, 10:28 PM
tracy tracy is offline
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Default Re: magnetic growth rods

Hi battleahead,

Your baby is having major surgery...so nerves are understandable! I vomited in the park when Emily had growing rods put in! You know when you cant put it off any further, but still feel guilty? You know your baby, and its a bummer with magnetics not available. But hey, weve done the whole growing rod thing and have come out even straighter than we thought! Don't take too much notice of x-ray after. They will only get about half correction. Then every lengthening will get better. Our surgeon aimed at under 20 then got 4! Boom!!! They just are amazing so trust them! The nursing staff are incredible and your daughter will have a 1 on 1 in ICU tomorrow night. They have parents beds right next to ICU, but its the new hospital so it might be different? Just ask them. Most of all you are the Mum and will be there 24/7 so eat & take a walk when princess is sleeping! Its going to be a hard day, but has to be done! Sleep tight and Let us know how it goes. Praying like you wouldn't believe!!! XXXXX
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Old 30-06-2015, 08:18 AM
thebattleahead thebattleahead is offline
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Default Re: magnetic growth rods

Hi Tracy,
I thought I would update you on Kaitlyn's operation, her operation was meant to be at 7:30am yesterday morning and the Doctors came to her bedside at 8:30am to say sorry there is bad news we have had to cancel Kaitlyn's operation because one of her surgeon's are at home sick with gastro plus there is no Icu bed available for after Kaitlyn has her operation, I went mad because this always seems to happen every time Kaitlyn is booked in to have an op they never have an icu bed and the op gets cancelled, they can't put an icu bed aside for Kaitlyn's op we just find out on the day if one is available.
Kaitlyn's new operation date is 20th July as that is the only date both her Surgeon's are operating and Kaitlyn has to get admitted the day before on the 19th.
I just wish it was all over I am so stressed thinking about it.
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  #10  
Old 30-06-2015, 06:28 PM
tracy tracy is offline
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Angry Re: magnetic growth rods

Hi Katrina,

You poor thing! I am so sorry to hear that as I thought it would be behind you and over & done with. As if its not hard enough gearing up for it with your daughters medical history. I know that everyone gets sick. I get that. But what I don't understand is they should have bed ready in ICU as the surgery is booked in? If they know your coming why haven't you automatically got a bed? Please explain why that is? No wonder your cranky! We have never had that problem? Does it work different if you are public or private? That is just so mentally draining on your whole family! What if you get there next month and they do the same? Meanwhile your baby is in pain and confused. That is just so unfair! This is a lengthy process with growing rods and on-going surgeries. Theres at least 8 surgeries. What if they all get postponed due to bed availability? I shudder to think in a brand new massive hospital that this is happening. Hang in there Katrina.
Sending hugs to you and your princess
Tracy x
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