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Old 06-06-2010, 06:52 PM
lee lee is offline
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Default Where do I start?

Hi Everyone, I’m new to the forum. I was diagnosed with scoliosis when I was 16 years old, my local GP told my mum that it was nothing to worry about and there wasn’t much that could be done so not to worry. At the age of 19, I was experiencing back pain and had my first x-rays and saw a specialist. He advised me I was fine, I should stop wearing high heels and that I should not experience any problems with pregnancy or anything else. At no time was I told I should have this monitored regularly or do any exercises or anything else – I would be fine.

Now at the age of 43 I am significantly worse. One shoulder is higher than the other, one hip sticks out much further than the other, my ribcage sticks out on my back no matter how hard I try to stand straight. The recent x-rays of my spine show an ‘S’ shape that belongs on Superman’s chest and explains why I am now considerably shorter than I used to be. The reason I had more x-rays was because I am experiencing increasing pain and discomfit.

So I guess the doctors were right, I have had a fairly normal life with no significant pain but I’m only 43!! What scares me is how bad I have become over the last 20 years and how bad will I get over the next 20?

The worst part of all this is that now my 13 yo daughter has the same. I insisted on x-rays when she was 6 and have seen our local GP at regular intervals voicing my concern that her scoliosis was getting worse and was told that it was within normal parameters and I shouldn’t worry – I even showed him my back so he could understand my concern. Time for a new doctor.

Today my daughter had new x-rays done and and I can easily see the curvature is worsening.

We live in rural NSW where specialists for this don’t exist. We will be required to travel to either Sydney or Brisbane. Our GP cannot recommend any specialists as she has never had to refer anyone for this before. I have been reading with interest some of the successes on this forum and am wondering where I should go for the best treatment? I understand that Dr names cannot be posted.

I don’t want to be the hunched, crooked old lady walking down the street and I will do anything in my power to prevent my daughter from getting any worse. After being told for most of my life that nothing could be done and now reading some of your stories I have hope that something can be done.

Your responses will be greatly appreciated.


Lee
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Old 06-06-2010, 09:18 PM
Admin Admin is offline
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Default Re: Where do I start?

lee

Welcome to the forum. There is a directory of spinal specialists on our website who have a special interest in the management of spinal curvature. You will find specialists in both Sydney and Brisbane on our list.
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Old 06-06-2010, 11:51 PM
Rodverta Braefusion Rodverta Braefusion is offline
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Default Re: Where do I start?

Hi Lee,
Welcome to the forum. So sorry to read about your dilemma. If you have any questions, please don't hesitate to ask. While this forum is still on the 'young' side, there are people on here that may be able to answer your questions based on their own experiences. Hope you had a great weekend, seeya round on the forums!
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Old 20-06-2010, 01:59 AM
aabxy aabxy is offline
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Default Re: Where do I start?

Dear Lee,
You wrote: "... I am wondering where I should go for the best treatment? I understand that Dr names cannot be posted." Other readers can, however, send you a private message to recommend a particular doctor or hospital. In fact, maybe that's what you were thinking of when you mentioned this.

Since I don't live in Australia, I can't help with this. But I'm sure someone can. Good luck!

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Old 01-08-2010, 11:45 PM
tassiemite tassiemite is offline
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Default Re: Where do I start?

hi im also new to this forum and was diagnosed with scoliosis about 3 yrs ago im in my 40s now but i reicieve chiroproacter in fremantle and it seems to work for me as well as a set of back stretching exercises to do. I lift a awful lot at work which doesnt help....My daughter who lives in canberra is 17 what are the chances of her having the same condition as me as my mother also has it..would it be a good idea to have her back examined to?
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Old 02-08-2010, 07:18 PM
Jen Jen is offline
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Default Re: Where do I start?

I don't think I saw this thread earlier, but Lee, I often send PMs to people looking for a specialist in Brisbane, having been treated by a surgeon there, who did a great job on my back. If I haven't sent you one already, please PM me and I will give you his name. He treats both teens and adults and I'd highly recommend him.

tassiemite, I was diagnosed at age 13. My grandmother also had it slightly. I have two daughters, neither of whom is showing any signs of scoliosis. I think it does follow in families quite a lot, but not necessarily, however, I'd suggest your 17 y.o. has her GP do a simple bending test to check her back. If she has it, it's good to get a starting point then follow progression over the years.

Meantime, try not to aggravate your back by lifting heavy loads. Is there some way you can avoid the lifting in your job? I would also suggest you get a referral to a spinal specialist, preferrably a specialist in scoliosis, get some x-rays done, just to get an idea of how the curve is/isn't progressing and find out what your options are, if it is. Best of luck!
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Old 16-08-2010, 10:59 PM
tassiemite tassiemite is offline
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Default Re: Where do I start?

lee to answer yr question my i work in child care lifting is unavoidable and if tell my boss she will sack me i told my daughter about the coondtion and left it up to her to get herself checked.

im on a mimmum wage so i cant afford a specialist to get treatment...there is nothing in the public system and usually money talks if u want help or u have to wait 12 months for treatment
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Old 17-08-2010, 02:38 PM
Jen Jen is offline
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Default Re: Where do I start?

I know it's difficult, and everything to do with scoliosis is expensive. But if I was you, I'd still have one appt. with a scoliosis surgeon to see what your options are. If it's likely that you'll need surgery down the track, I'd join a health fund in plenty of time to be covered for it, because it can cost an arm and a leg.

The other option is, to get into the "system" with your doctor, so that eventually, if you need surgery, you can get it done in the public health system, which could mean a long wait. So the sooner you get into the system the better.

If you're lucky, you may never need surgery, but until you see a scoli surgeon, it's impossible to know. That one, initial appt. will be expensive, but a good investment in your future.

Meantime, try not to lift those kids unless it's absolutely necessary - or find a new job sitting down. Easier said than done, I know, but this is your health we're talking about. Pre-op, lifting my grandchildren always brought on pain.
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