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Old 20-04-2012, 11:01 AM
jane jane is offline
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Default mum from wa

My daughter has a 63 degree curve and is waiting to be braced until surgery is possible. The waiting list is long. I would love to hear from anyone in WA who has been through surgery or has a child that has been through surgery. It would be wonderful for Sophie to speak to someone her own age about scoliosis, bracing and surgery. I'm doing lots of thinking about the surgery because currently Sophie has no pain and has not had any even with a curve this big. The specialist said her endless swimming has made her as strong as she is and has helped her greatly. I guess I just need to speak to another parent too as our time with the specialist and orthotist has been so limited.
We are in the country but travel to Perth regularly and would love to hear from someone . Thanks
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Old 20-04-2012, 04:03 PM
Dom's mum Dom's mum is offline
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Default Re: mum from wa

Hi Jane, welcome but wish you didn't need to be here! I can't help you personally sorry as we are from NSW. My son had surgery at age 15 in November
2010. He wasn't braced beforehand as his curve was too low and severe to benefit from bracing, surgery was the only option. Our waiting lists were very long too - up to 18months so we decided to go private to have his surgery.
Just wanted to say really we know how tough it is to see your child go through this, you wish you could do it for them. The waiting and second guessing are so hard. Ask any questions you like and hopefully there will be someone from WA come along for you so you can compare notes.
Take care
Annette
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Old 21-04-2012, 02:07 PM
jane jane is offline
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Default Re: mum from wa

Hi Anette,
Thank you for getting back to me. Unfortunately having private health cover in wa makes no difference to waiting time as we have one surgeon and that is it! How quickly did you get in going private in Sydney? The thought had crossed my mind to go interstate as we are 3 hours from Perth anyway but I worry about the follow up after the surgery. How long was it before your son returned to school? How are things for your son 16 months on from surgery? Did he have posterior or anterior approach and how is his scar? What angle was his curve pre-surgery and post surgery? I need to ask a million questions but this will do for now.
Thanks for your support
Jane
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Old 23-04-2012, 10:28 PM
Dom's mum Dom's mum is offline
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Default Re: mum from wa

Quote:
Originally Posted by jane View Post
Hi Anette,
Thank you for getting back to me. Unfortunately having private health cover in wa makes no difference to waiting time as we have one surgeon and that is it! How quickly did you get in going private in Sydney? The thought had crossed my mind to go interstate as we are 3 hours from Perth anyway but I worry about the follow up after the surgery. How long was it before your son returned to school? How are things for your son 16 months on from surgery? Did he have posterior or anterior approach and how is his scar? What angle was his curve pre-surgery and post surgery? I need to ask a million questions but this will do for now.
Thanks for your support
Jane
Hi Jane,
Ask as many questions as you like, there are so many going around in our heads and hearts at this stage!
That is tough with only one surgeon. We were lucky in that the surgeons who did the surgery privately were the ones we had already seen in the public system so we didn't have to wait as long for an appointment. (Talking to others who are new it can be about four months before you get a consultation) It was probably only a month then we waited about four months until surgery, partly too to have it done in the school holidays to give him a longer recovery time - eight weeks which is longer than some kids have. It was a relief to have the control of picking a date rather than waiting for the phone to ring - that was doing our heads in! He had it done on the 29th November and had no trouble going back to start the next year - his mother was a much different story!
Dom's curve was about 70 degrees for the lower one and a corresponding one at the top. We were incredibly lucky with his surgery that he straightened so well and is only rodded from T11 to L4 with the curve that is left being only about 15degrees - better than much of the general population. His surgery was posterior and his scar is great - a really neat job and I think we have it easier with him being a boy, scars are something to show off!
The hardest thing was the eight months he had to have off sport and we were both overjoyed when he got back to playing tennis. To be "normal" again. Hard to compare how he is to others 16 months post op as he had another major surgery after 12 months. Chest surgery to repair pectus excavatum which was pretty brutal. It is a bit like he has had post traumatic stress as he found it much harder with the physical restrictions this time - just too close to the other surgery. He has always had an amazing attitude but been a little depressed this time. There are possible genetic issues for him to deal with as well. The thing he will tell you he misses the most is just a simple stretch but he has no physical pain or side affects. He still hasn't put the weight back on that he lost with surgery and I haven't lost the weight I gained with the stress! otherwise life is just the same as it was before.
Hope this helps a little
Take care
Annette
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Old 24-04-2012, 12:53 AM
jane jane is offline
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Default Re: mum from wa

Hi Annette,
Your answers help so much and fill me with hope. I am a teacher and have spent much of these school holidays researching the whole scoliosis scenario. I have even started researching the possibility of travelling interstate for surgery and have had some wonderful people reply already from NSW and Victoria.
I can imagine Sophie losing lots of weight from the surgery too. She is tall and lean like her father ....as for me...well I can say Mr Cadbury is one of my friends too as well as being up close and personal with a certain Mr Lindt.
Sounds like your boy is so amazingly brave and you need a medal too. I am lucky that my day job is so busy I guess in a way.......I can't dwell too much with a class of four year olds that need me to be there for them in every way. Their hugs keep a smile on my face too.
Thank you again for your support,
Jane
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Old 29-04-2012, 03:45 AM
Ella Ella is offline
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Default Re: mum from wa

Hi Jane, hope all is going well. I've been reading the forums for a while but thought I would reply when I saw your post.

We live in Perth and our 15 year old daughter was diagnosed with a 55 degree curve in Dec 2009. At that stage the specialist advised us that our best option was surgery but as she was only 13 at the time and still growing it was best to monitor the curve and wait and see. Long story short, in Jun 2011 she had mostly stopped growing and the curve was presenting at 68 degree so she was listed for surgery. She had her operation on the 10th April 2012. The curve was reduced from 73 degree to about 32 degree and she has gained about 6cm of height.(!)

At this point in time she is nearly 3 weeks post op and everything is going really well. She was in hospital for 8 days and sent home with tramadol (slow relase), panadol and oxynorm (quick release). She is almost off everything except for panadol, 2 tabs 3x per day, and is managing pain very well. Shoulder pain has been present and a problem but heat packs help that a lot. Main problem has been disrupted sleep patterns but we are hoping these will settle down soon. She is hoping to be able to return to school within the next week or so starting at one or two lessons per day and slowly building from there.

If you have any specific questions I'm happy to reply to you on this forum, privately or through email if you like. I cannot speak highly enough of the surgeons or the hospital for their care and attention to our daughter. We have been amazingly lucky and hopefully all will continue on track. Hope I've been able to help,

Ella.
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Old 04-05-2012, 08:24 PM
Dom's mum Dom's mum is offline
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Default Re: mum from wa

Hi Jane,
Just read your post and the one from Ella. Glad you are doing well in your research (we gain so much knowledge we would prefer not to have!), the internet can both a blessing and a curse when you google! Sometimes a bit overwhelming. I have been so grateful for this forum, you know you are not alone.
Do you have another appointment? That was reassurring to hear from Ella and know you have a great surgeon in Perth if that is the option you choose. It is hard enough to travel in your own state. We were two hours from home for Dom's surgery and that was tough not having family around, motels etc. It can be a bit like preparing for a marathon getting ready for surgery (not that a marathon is ever going to happen here with "Mr Cadbury" on board!)
Yes, my boy is amazing, as are all these kids. They really deserve more support with what they get through.
Hi Ella,
Glad to hear your daughter is doing well. Always such a relief when it is done
Take care
Annette
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  #8  
Old 05-05-2012, 12:29 AM
jane jane is offline
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Default Re: mum from wa

Hi,
yes research is going well and I am trying to find valid sites and speak to people who have been through it with their children. Have had wonderful support from everyone on the forum and I thank all those that have sent me replies and contacted me. I'm really hoping we can get something done for Sophie fairly soon (depending on how much growing there is to do)> I must admit I like the idea of avoiding bracing if we can. I am keeping Sophie in the pool and I am going up and down that black line too - it's a very peaceful place to be makes me feel a little less guilty about excessive chocolate consumption.

Hope everything is still going well for you Ella.
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  #9  
Old 04-10-2012, 10:04 PM
Tubefeed Tubefeed is offline
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Default Re: mum from wa

Hi Jane
Whereabouts in the country are you? How old is your daughter?
We are based in Perth. My daughter is 12 and has a 50 degree curve and is on the wait list for surgery, though in reality we will prob wait for as long as we can for surgery, maybe 18mts or 2 yrs, but that depends on whether the curve stops or progresses.
We are also in a brace.
Cheers
Suzie
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  #10  
Old 01-05-2013, 09:01 AM
hallfamily hallfamily is offline
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Default Re: mum from wa

hello jane, our 9yo daughter has had her brace since easter this year. we to are in sw wa, in busselton. so far things are going well, she is handling it much better than her parents!!
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