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Old 22-05-2014, 09:51 PM
DeeElle DeeElle is offline
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Default Surgery booked January

Our 11 yr old daughter was diagnosed with scoliosis (3 curves - 27, 29 and not sure of the one in the neck) late November 2013. We had our 6 monthly checkup and the thoracic curve has increased to 40. She's grown nearly two inches in that time.

Our ortho surgeon (in Adelaide) has booked her in for surgery in January 2015. She will be 12.4 then.

It's really awful news and I'm in a terrible state. My husband is pretty upset too, but coping. Miss 11 says she expected surgery eventually but not so soon. She's coping amazingly well, has a great attitude. The surgeon is going to link us up with another family who have gone through it.

He expects to fuse 9 levels and said the lumbar/neck curves should improve with a thoracic fusion. He doesn't believe there's any point to bracing given her age and the type of curves.

Our daughter is very thin and tall (only 34 kgs and 159 cm) so I'll be taking her to a dietitian to try and put a bit of condition on her.

All in all, I'm trying to keep a brave face on it, but I'm so worried about her. She's a bit concerned about the pain and scarring.
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Old 23-05-2014, 12:24 AM
Rodverta Braefusion Rodverta Braefusion is offline
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Default Re: Surgery booked January

Hi DeeElle, As you may or may not be aware, I am in Adelaide as well. As I am slowly getting a support group going in Adelaide, I would be happy to offer you any support during this time of preparation and after Miss 11's surgery. Just let me know. I am happy that your surgeon is putting you in touch with another family. In the meantime, if you feel like a coffee and chat or to talk on the phone, just PM me and I will give you my contact details.
The idea of taking her to a dietitian is good. Weightloss during recovery can be in some cases a little extreme. It is not unheard of to lose upto 5kg or more. The reason being (as explained to me) is that the body is using all the calories to heal itself nad in a surgery like this, lots and lots of calories are burnt.With regards to the pain, tell her not to worry, it is painful but I found it more of a discomfort the first time. The Anaethetist usually does an amazing job keeping your pain under control and then it is upto her to push the pain button as she sees fit. The scarring these days is usually minimum. I had my cut sutured using glue both times. Even after this revision surgery, my line has already started to fade. People who have asked to see it, think its amazing how 'it's there, but it's not! One question i have for you. Is the Surgeon a Spinal Surgeon or an Orthopaedic Surgeon? Reason for question: research to add to my support group literature. Best wishes, RB
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Old 23-05-2014, 10:18 AM
DeeElle DeeElle is offline
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Default Re: Surgery booked January

Thanks so much for your offer of support. I will definitely be in touch. I feel like I need the news to sink in before telling people as waterworks aren't far away.

She is seeing a paediatric orthopedic surgeon in Adelaide. We will probably go to (name of hospital removed by admin) for the surgery if our Health fund covers it. We're still waiting on item numbers. I'm also concerned about Marfans but the surgeon doesn't think she has it. He's booked an echocardiogram just to make sure her heart valves are ok.

Best and thanks again

Dy
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Old 23-05-2014, 10:58 AM
Eliz Eliz is offline
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Default Re: Surgery booked January

Hi DeeElle,
Really feeling for you, it's a very hard time!
I am in perth but happy to chat with you anytime.
Our case is slightly different and it wasn't diagnosed until curve over 50. The waiting period for surgery in our one operating theatre town ( for this surgery anyway) was 18 months to 2 years so we went to Melbourne. Saw spinal surgeons in both places and made a very easy decision in the end.
I hope you will consider consulting more than one surgeon. This is common practice and it does not show a lack of faith in your surgeon, it is just smart.
The kids really are amazing and I'm sure your daughter will rise to the challange also.
My son was 15 , scar was a non issue for him. Down the back so easily covered, but I think it is a good reminder that they can get through major hurdles in life!
Mesomorphic body type more predisposed to scoliosis I think, (tall and thin), my son was 180cm and 52 kg approx. try to build up quads with squats , that's all they use postop, he had very weak legs and knees.
Send me private message if you want to chat more,
Liz
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Old 23-05-2014, 06:31 PM
DeeElle DeeElle is offline
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Default Re: Surgery booked January

Yes, it's awful, but only because I hate to think of my daughter in pain or having to deal with such a big issue at such a young age. I'd take it on for her in a heart beat if I could.

Amelia hasn't hit 50 degrees yet but the way it's progressing, we all think it's highly likely to reach 50 within a few months. I hope the other two are compensatory curves and will resolve once the thoracic curve is sorted out. She's not in any pain or discomfort.

I'm considering a second opinion but the ortho surgeon does seem very good and I feel fairly confident he knows what he's doing. Thanks for the support and I'll certainly think it through some more.

all the best

Dy
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Old 23-05-2014, 07:53 PM
Shan Shan is offline
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Default Re: Surgery booked January

Hi there,

We are in Adelaide, too. My daughter had surgery for an approx 70 degree curve in June last year. We're only a couple of weeks away from the 12 month anniversary. Time since then has absolutely flown.

She also had surgery at (name of hospital removed by admin) and possibly the same surgeon. She turned 13 two weeks before the surgery and was fused T4-L1. She also had compensatory curves in the lumbar spine and neck.

The surgery and recovery were MUCH easier than we anticipated. I was also upset at the initial news, but quickly decided we just had to get on with it. We also had about a six-month wait between hearing she needed the surgery and the actual operation.

You're welcome to PM me if you would like to chat. But just to reassure you, life after spinal fusion is fantastic for our daughter. She is a competitive swimmer and managed to qualify for the national championships only seven months after the operation. Just today, she has been named as part of the state swimming team to compete in Melbourne in July.

She competes in triathlons, runs cross country and enjoys a 100% normal life.

Her recovery was extremely fast. She felt so good, she ran the City to Bay three months after the surgery (she does NOT get the sporty genes from me!). Happy to answer any specific questions you might have.
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Old 24-05-2014, 10:43 AM
DeeElle DeeElle is offline
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Default Re: Surgery booked January

Goodness Shan

That made me feel better knowing your case is similar to ours. I'll definitely PM you to find out more. My daughter isn't so active. She was great at Cirkidz but dropped out recently and we haven't replaced it with anything. I'm looking into physio and hydro a few times a week to help build up her condition. She's more musical and artistic than sporty unfortunately. I know sport would be great for her but she's not that interested.

So glad to hear your daughter recovered so well!

Dy
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  #8  
Old 24-05-2014, 09:57 PM
Leebri Leebri is offline
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Join Date: Jan 2014
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Default Re: Surgery booked January

Hi,
My daughter is 12 and had her surgery in March this year. Her curve was over 80* and her fusion was from T4to L4. She wore a brace for 18 months but unfortunately it didn't help. The surgery is major but well worth the couple of weeks of worry and stress after the surgery. I can not believe how quickly my daughter has recovered but the best thing is how straight she is. She is now able to wear clothes that sit nicely on her, before she was wearing big baggy tops to cover her brace and then her rib hump. We did have some complications after the surgery but they seem like a distant dream now. The hardest part was the wait before the surgery. I wish you and your daughter the best of luck and I suggest that you get your daughter to build up her leg because she will be using them a lot after the surgery.
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Old 27-05-2014, 11:27 PM
DeeElle DeeElle is offline
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Default Re: Surgery booked January

We've booked into a pediatric physio and dietitian to build up our kid's condition. I'm a tad annoyed because when we saw the ortho surgeon 5 months ago he said there was no point in seeing a physio and her weight was fine. Now he thinks she's thin and wants more condition on her. Might've been nice to hear this earlier, especially as I raised our kid's weight at the first appointment.

I do feel the health system isn't as coordinated as it could be, even if you have private cover. Our GP was a tad nonplussed and the first physio we saw had little idea about scoliosis.

Now we've found a good physio I feel a lot more confident, even if it's to help with surgery aftercare. I also suspect surgery will be earlier than December as the ortho nurse rang today and mentioned surgery might be earlier.
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  #10  
Old 28-05-2014, 02:06 AM
Rodverta Braefusion Rodverta Braefusion is offline
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Default Re: Surgery booked January

Hi Dee, sounds like all is falling into place. With regards to the physio, is he/she conditioning her quad muscles because she will definitely rely on them alot. Also, try and see if she can show her the log roll technique. She will be able to practice it in advance and she will also get to see and feel the muscles she will need to do this. If I thibk of anything else, will post again. Best wishes, RB
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