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  #11  
Old 21-05-2014, 05:31 PM
Eliz Eliz is offline
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Default Re: Perth people

Hi Gilly,
Have sent you a Pm! Look forward to hearing from you.
Liz
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  #12  
Old 25-05-2014, 12:32 AM
jane jane is offline
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Default Re: Perth people

Hi Gilly,
Liz has probably told you about interstate options. Both her son and my daughter had surgery there and we avoided bracing. I helped answer lots of Liz's questions when she was trying to avoid the long wait in WA and I am happy to help you in any way I can. It is hard not to have the option to go private in WA If you have the cover to do so.
All the best,
Jane
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  #13  
Old 08-06-2014, 10:44 PM
Gilly Gilly is offline
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Default Re: Perth people

Hi Jane,
A bit of a stressful week this week as my son had his brace fitted, I think I am going to be continuously fighting with him to wear it, it looks horribly tight and uncomfortable.
I would be interested in looking into other options regarding surgery for him but I guess I'm a bit confused as I keep hearing that he has a lot of growing to do and they would rather do it one he has finished, he isn't a tall boy so in one way I want to give him the chance to grow but on the other hand putting him through the stress of having to wear the brace is going to be stressful for everyone...any suggestions?
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  #14  
Old 09-06-2014, 05:53 PM
NaomiU NaomiU is offline
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Default Re: Perth people

Hi Tubefeed,

You will probably be happy to know that I am a 19 year old female who has been Scoliosis free since 2007 and is now a fully functional, non-impaired and happy individual. I'm new to the forum and my goal is to help people the same way other people helped me.

My pre-op story and spinal curvatures seem similar to your daughters. This is my story.

I was diagnosed at 28 degrees in my thoracic spine when I was 7 years old after having chest x-rays for pneumonia. By the time I was 8, an old orthopaedic surgeon in WA who is now retired, opted for me to go into a brace. My parents declined his early/harsh intervention.

From here I frequently had appointments with a new (and renowned) orthopaedic surgeon in WA (cannot name surgeon due to site regulations). By the time I was 11 my curve had progressed to 50+ degrees in my thoracic spine and 20 degrees in my lumbar spine. I was put into a Boston brace almost immediately and wore this 22 hours a day which covered my whole torso from the middle of my chest to my bottom.

The brace was given to me in hope of slowing down my scoliosis before the surgery date, although this did not go as planned. Even though I was extremely disciplined in wearing my brace (sometimes for more than 22 hours/day) my curve progressed to 68 degrees in the thoracic spine and 35 in the lumbar spine with spinal rotation. I had my surgery in 2007 at 12 years of age and am now fused from T2-L1.

I do not regret surgery one bit. It was the best decision my parents ever made for me and if I was to make the choice myself, I would do the exact same!

Today I am a fully functional university student studying physiotherapy (Yep! Scoliosis and the human body inspired me that much). I am happy to answer ANY questions you have regarding ANY part of your journey through scoliosis.



I have two specific tips in regards to your issue about the brace and also the level of fusion (if required);
1. Brace chaffing: I wore Boston T's underneath my brace at all times during my brace treatment. They are super thick (made like this to absorb sweat quickly and also provide extra padding) and they stretch over 150% to ensure no wrinkles that can be super annoying under a brace. They also have armpit extensions (they are not obvious at all) that are SO GOOD to prevent armpit chafe. The only down-side is is that they are imported all the way from the US.
The website is: http://www.bostonbrace.com/content/accessories.asp
2. Level of fusion: It was intended that I be fused from T2-L3. This was unnecessary due to my religious devotion to physiotherapy treatment. I saw a physiotherapist 4 times a week personally and performed a 45 minute exercise routine twice a day for a whole year. My spine was so flexible during surgery that it was easily straightened and did not require fusion in the lower lumbar vertebrae. It is always a bonus if you spare lumbar vertebrae as these are the parts of your spine that are primarily involved in flexion/extension (bending).


I'm sorry this is long winded but I hope to provide a sense of understanding and sympathy for what your daughter is going through! I've experienced it first hand and will answer ALL questions you have.

Naomi!
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  #15  
Old 11-06-2014, 06:33 PM
Chic Chick Chic Chick is offline
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Posts: 39
Default Re: Perth people

Hi All,

I have a similiar story with a Boston brace, but I'm now slightly older!! I have just been cleared that my curvature has not changed in the last 5 or so years. My brace was thankfully successful as I grew over 40cm in the 2 years I wore the brace.

I had a brace for 2 years with 2 curvatures, both of which came back by around 20 degrees. I played competive sport when in the brace and afterwards, all the way through to representing my university at university games. Luckily, I have very little ongoing pain, and most people in my world would never know i had a back issue.

I work a desk job now, so I am careful that I move about, have the desk and chair ergonomically set up for me specifically.

My tips:
- like below, wear singlets. I found Bonds boys singlets were great for me
- excercise! swimming is the best excercise you can do, not only is it great for your core strength, but it is non weight bearing. Just tell the boys that it will make their guns awesome!!
- eat smaller meals more frequently, this helps for that lucky hour that you have out of the brace that you can get back in
- check with the school, I was allowed into the teachers staff rooms to take a shower at lunch time in summer

all the best
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  #16  
Old 27-09-2014, 11:30 AM
katea katea is offline
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Smile Re: Perth people

Hello, just wondered if there is anyone on the Perth thread with children who would like to chat with my daughter - she is 11 and has had a rigid brace for 4 weeks now (which she hates but is coping well with!) . She has made some lovely friends though the 'curvygirls ' website already and chats often with them, but all are in the US and Canada and she wonders if there's anyone here in Perth who would like to get in touch too?
Thanks
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  #17  
Old 05-01-2015, 10:43 AM
Izzy Izzy is offline
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Join Date: Oct 2014
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Default Re: Perth people

Hi am Izzy's mum (first time posting) Izzy our 11year old daughter a year before (before scoliosis) started mentioning that she had headaches, and light headiness and sometimes a sore back after sport mostly, so we first went to GP then a physio and nothing showed up.About a year to the day after Izzy played in a all day netball carnival and asked me to put some cream and rub on here back because it was aching ,while slightly bent forward to rub here back I noticed her curve. That was August of 2014.
That's when our scoliosis journey started we have a specialist here in Perth, that we have seen and the curve has progressed twice at the moment we are still waiting on Izzy being fitted for a brace. Izzy is very active and enjoys playing a lot of different sports at the moment she swims in our local swimming club great exercise . We are still coming to terms with accepting where we are at and trying to just go with it and remember to ask questions so we can and help support Izzy along the way.
I have been reading the post on this forum and have started reading the book Straight talk with the curvy girls, good read , thanks for sharing all your stories it helps.
I have just read NaomiU thanks for information and Katea's post Izzy is same age and lives near Perth maybe girls when ready and feel up to it can have a chat?

Thanks from
Izzy's mum
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  #18  
Old 03-03-2015, 04:51 PM
katea katea is offline
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Default Re: Perth people

Hi Izzy's Mum, have PM'd you
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  #19  
Old 20-05-2015, 04:41 PM
kerryf kerryf is offline
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Join Date: May 2015
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Default Re: Perth people

Hi - my 13-year-old daughter has scoliosis and I can't believe how bad the service is in WA. I did an interview this morning with Geoff Hutchison on ABC and am lobbying my local member and Health Minister to get something done about. If you feel the same way, now is a good time to lobby too. It's appalling we have to wait so long and they have now outsourced brace making to a private contractor who specialise in lower limbs - yes feet and knees! My daughter is the one suffering from Health Department mismanagement.

For those who have opted for treatment in Melbourne how do I find a suitable specialist there?

Look forward to hearing from you. Kerry.
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  #20  
Old 21-05-2015, 05:47 PM
Admin Admin is offline
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Default Re: Perth people

Welcome to the forum, Kerry.

There is an Australia-wide list of spinal specialists who have a particular interest in the management of spinal curvature on our website.

All the best.

Admin
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