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Old 18-06-2013, 02:41 PM
Tubefeed Tubefeed is offline
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Lightbulb Perth people

Hello
I would love to start a thread for Perth people. In some respects we are unique due to the resource limitations in our State, so we have some stories to share! Hopefully there are positive ones as well as the frustrations.

My story....
I am the mother of a 13 yr old girl. She has been in a brace for over a year, and has an upper thoracic curve of 55+ and a smaller lumbar curve.
We are on the 'waiting list' for surgery, which means we are probably 18 months from our operation.
Some current thoughts/frustrations:
  • my daughter has some serious chafing on her lower back (even though we always wear a singlet underneath - this is the first time she has had a significant skin issue in relation to the brace). we are treating it with antiseptic cream, but it is on the cusp of infection. a GP appointment may be imminent.
  • we had a formal review with our surgeon (well the student doctor anyway!) and the orthotic person, they are going to put some extra padding in the brace, but we have to wait several weeks for this appt!
  • part of me wishes we could have the surgery soon and get rid of the ****** brace, and the other part of me knows the surgery is going to be full on, and that we should not be in any hurry for that either!
I have a load more gripes...but I'll spare you

Would love to 'meet' some of you.
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  #2  
Old 18-06-2013, 02:43 PM
Tubefeed Tubefeed is offline
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Exclamation Re: Perth people

...oh and also interested to know if there are any Support groups or Facebook pages for young girls in Perth and/or if there is enough interest in getting one set up.
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  #3  
Old 18-06-2013, 04:41 PM
Eliz Eliz is offline
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Default Re: Perth people

Hi there,
We are in Perth and would love to chat. Look up some of my original posts to get my sons story. Private message me too!
Liz
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  #4  
Old 23-06-2013, 09:35 AM
Liesel Liesel is offline
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Default Re: Perth people

Quote:
Originally Posted by Tubefeed View Post
Hello
I would love to start a thread for Perth people. In some respects we are unique due to the resource limitations in our State, so we have some stories to share! Hopefully there are positive ones as well as the frustrations.

My story....
I am the mother of a 13 yr old girl. She has been in a brace for over a year, and has an upper thoracic curve of 55+ and a smaller lumbar curve.
We are on the 'waiting list' for surgery, which means we are probably 18 months from our operation.
Some current thoughts/frustrations:
  • my daughter has some serious chafing on her lower back (even though we always wear a singlet underneath - this is the first time she has had a significant skin issue in relation to the brace). we are treating it with antiseptic cream, but it is on the cusp of infection. a GP appointment may be imminent.
  • we had a formal review with our surgeon (well the student doctor anyway!) and the orthotic person, they are going to put some extra padding in the brace, but we have to wait several weeks for this appt!
  • part of me wishes we could have the surgery soon and get rid of the ****** brace, and the other part of me knows the surgery is going to be full on, and that we should not be in any hurry for that either!
I have a load more gripes...but I'll spare you

Would love to 'meet' some of you.

Hi Tubefeed
What brace is your daughter wearing? For that age the SpineCor brace is really worthwhile trying. I am 53 and wore it for 18 months. It helped a little but because of my age will have to resort to surgery.
Have a look on their website with great success stories with no surgery. She is lucky she is so young a lot can be done without surgery. All I can say is research, research, research...
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  #5  
Old 24-06-2013, 04:36 PM
Loulamb13 Loulamb13 is offline
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Join Date: Apr 2013
Posts: 10
Default Re: Perth people

Hi, have a look at the Curvy Girls support group (see my post under the Support Groups section - I am the Melbourne group leader). There is a group in Perth run by a wonderful 12 year old and her Mum. Find their contact details through the website www.curvygirlsscoliosis.com. There is a Curvy Girls facebook group too for adults - worldwide and one for Australia. Good luck with everything that is going on, we all share the same frustrations and issues but I know the system for treatment is different for WA. Hope things improve for you guys.
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  #6  
Old 24-06-2013, 09:45 PM
jane jane is offline
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Default Re: Perth people

Hi, we are from Bridgetown in WA. We did not want to wait in the WA queue so chose to go to Melbourne for surgery and so avoid the bracing. That was a year ago on Friday. The Melbourne system really looked after us and we can still have interim checks in Perth as they are supportive of the Melbourne surgeon. Please feel free to private message me if you wish. I can give you information, as can Liz about how you can have surgery done privately in the Eastern states snd still be covered by HBF.
Hope this helps
Jane
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  #7  
Old 18-05-2014, 02:04 PM
Gilly Gilly is offline
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Join Date: May 2014
Posts: 7
Default Re: Perth people

Hi guys,
My 15 year old son has recently been diagnosed with a 54 degree left curve which makes him slightly 'atypical' according to the Dr.
We went for casting of his brace on Wednesday this week...wow, what an experience that was..although the guys were absolutely fantastic!
He will need to wear the brace for 22 hours a day and I would love to chat with anyone else in the Perth area who has had a teenage boy go through this as I am feeling a little overwhelmed at the moment.
I thought we would be able to 'build him up' to wearing it for this long but have been told that we need to start at the 22 hours from the day he gets fitted. My son is managing to keep his spirits up but I know it's going to be an ongoing battle getting him to wear this brace every day.....any suggestions would be greatly appreciated
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  #8  
Old 18-05-2014, 05:56 PM
Tubefeed Tubefeed is offline
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Default Re: Perth people

Hi
Consider getting In touch with the support group above.
There is a small group of lovely girls that meet every so often to have a chat.
All of the group are girls at the moment, but I am sure they would welcome your son, it is a unique way to meet some girls at least
Wearing the brace will be hard at first, but is important to stop the curve and he will adapt sooner than you think.
Did the docs give any indication of when they would operate?
Cheers
Suz
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  #9  
Old 18-05-2014, 08:35 PM
Gilly Gilly is offline
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Default Re: Perth people

Thanks Suz

I'm willing to take any advice or support that's going at the moment.

Dr has indicated surgery will be around Christmas next year so unfortunately he is going to be in the brace for quite a while...not very nice for a teenage boy.

What is the easiest way to join the support group?

Thank you
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  #10  
Old 18-05-2014, 10:06 PM
Tubefeed Tubefeed is offline
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Default Re: Perth people

http://www.curvygirlsscoliosis.com/g...australia.html

Try this link.
Hang in there
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