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Old 16-09-2011, 03:11 PM
GJR GJR is offline
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Default Another Frustrated Mum

Hi - I'm new to the forum but have been avidly reading this and gathering much other information after being told in the last month by spinal specialists that our only choice of treatment for my 13yr old daughter's scoliosis is surgery. A chiropractor diagnosed my daughter's scoliosis 4 years ago. After back scans confirmed a curvature of 21 degrees, two GPs opinions were sort and both said she was too young to treat at the time and a curvature of that degree was 'mild'. We continued with manipulation and massage through our chiropractor and occasional adjustments by an osteopath (the only practitioners who seemed concerned by her condition) but eventually stopped this as our daugter showed no signs of pain or problems with her 'mild' condition, playing sports at high levels and dance as well as excelling in high jumps (yes, she's tall for her age). Late last year we started to notice a hump under her right shoulder when she bent forward. Back to our GP, more back scans and her curvature has increased to 50 degrees... it pains me to mention this now knowing that we could and SHOULD have had her condition regularly monitored so we could have started treatment while her curvature was mild and workable. We are delaying any surgery decisions while we try bracing and exercise programs that we've sort in Sydney. It's just frustrating to know these would have greater affect if our GPs had provided better information back when it was first diagnosed. Many of the stories I've read on this forum have mentioned misdiagnosis by GPs... maybe we trust there opinion too much. I wish I'd gone on the sort of information gathering exercise Im on now 4 years ago... anyway, no regrets. Moving forward now. Wonderful to have found this amazing forum which has made us & our situation not nearly as lonely as it first seemed.
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Old 16-09-2011, 05:57 PM
MySon MySon is offline
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Default Re: Another Frustrated Mum

Hi GJR -
Welcome isn't it great to be able to 'talk' with others who understand. It's tough as a Mum thinking we wish we could have prevented this hey? Your daughter sounds fit, healthy and strong let us know how it all comes together for you. My son is a great kid tremendous sense of humour and in some ways stonger than me but still scared and annoyed that he has to go through this. I am trying to be strong and hope we get through the next few months okay - his surgery is 18 October. I am from Proserpine so the long trip home from Brisbane after the surgery worries me from point to point will take me about 4 hours - I will stay in Bris for an extra week after the operation. My best friend at school has scoliosis surgery harrington rods at 16 - she did everything I have done and is still strong fit and health now at 49 a bit of physio and arthiritis but she told me to have strengh and just do it - so that's what I'm doing - Dane's curve was 55 degrees 6 months ago i think it is getting worse.
Yes I think scoliosis is only for the specialists - I even found our first phsiotherapist and x-ray person quite useless but the specialists are good.
Stay in touch
Chris
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Old 16-09-2011, 10:19 PM
Christine Christine is offline
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Default Re: Another Frustrated Mum

Hello

I can't begin to tell you how little I regard any chiros or physioterrorists who claim they can cure or reduce the progression of scoliosis. I would have been rather wealthy if I saved all of the money I spent going to them! If you go back to many of my earlier posts you can read my story of having to endure it all of my life. Perhaps I am a bit of a cynic as there is still too much ignorance on this condition and I grew up surrounded by people who's heads were in the sand. So go forth and seek an expert specialist's opinion(and I mean scoliosis expert, not a GP or osteo).

This forum has some gorgeous members and is a wealth of support, specialists recommendations (by private messages only) and information about all sorts of things.

My surgery was in June this year. It has greatly reduced my curve, along with the pain and discomfort. And although I am still recovering and still don't have a perfect back I sooo wished I had the option to have the surgery when I was younger. My life would have been very different.

So a very big welcome to the forum and I wish you well in finding the right people.

Christine.
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Old 16-09-2011, 10:19 PM
Angela Angela is offline
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Default Re: Another Frustrated Mum

Hi GJR,
Welcome to the forum. My 16 year old daughter had surgery for her scoliosis in March. By the time we saw the specialist her curve was 50 deg and we were also told that surgery was the only way to correct it. Now that it is all over it was the best decision we made. I have sent you a private message.

All the best,
Angela
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Old 17-09-2011, 07:34 AM
sueham sueham is offline
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Default Re: Another Frustrated Mum

Hi GJR
Welcome to the forum. Like Angela, we didn't notice our 15 year old son's curves of 48 and 60 until it was too late and surgery was the only option. We didn't have further xrays closer to the surgery but I swear it had gotten worse during the year. We had an amazing surgeon we had complete faith in, and his op was 3 weeks ago and he's doing really well. The people on this forum are great and helped me so much at a very difficult time.
Good luck, Sue
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Old 20-09-2011, 01:12 PM
GJR GJR is offline
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Default Re: Another Frustrated Mum

Thanks for the replies - it's all so helpful hearing others experiences and advice. It's so hard to know what to do and I suppose the surgery seems so final (no going back...excuse the pun). I think this is why physio & bracing is worth trying. It's less intrusive and, it allows us to feel like we're doing something while we get our heads around the surgery. I'm hoping in Georgia's case (that's my daughter) that she can see if the external treatments help slow or reduce her curvature over the next 6-12 months. I look forward to staying in touch with the Forum and hopefully Georgia will add her own comments soon and chat to others her own age. Thanks again... Jenny & Georgia (GJR)
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Old 20-09-2011, 01:17 PM
GJR GJR is offline
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Default Re: Another Frustrated Mum

Sue - thanks for sharing your son's recent surgery experience. I hope he's doing well and wish him all the best from us. Jenny & Georgia
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Old 20-09-2011, 01:55 PM
tupperchick tupperchick is offline
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Default Re: Another Frustrated Mum

So the degrees amounts everyone is talking about will that be told to me ( for my daughter ) when we get the xrays done ?? We see the GP on thursday ( this week is going very slow ) and I will be demanding scans straight away ... What is everyones opinions on scans ??/ xrays or MRI which one do you think is the better ??? I am not mucking around with this, I will take on board what the GP says but as my husband is having spinal surgery on 10th Oct I will be showing his surgeon as well....
Anyway again whats the best scan ???
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Old 20-09-2011, 05:07 PM
katherineP katherineP is offline
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Default Re: Another Frustrated Mum

Hi there,
I had both an x-ray and MRI and ct scan prior to my surgery . But I was getting x- rays every couple of yrs to see if there was a change in my curve. My surgeon then had me do another after my surgery to see the difference. They will measure her degree of curvature before and after.. Hope that makes sense. Good luck. Please ask any questions this forum is fantastic .Kathy
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  #10  
Old 20-09-2011, 05:59 PM
sueham sueham is offline
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Default Re: Another Frustrated Mum

The process for us went like this: first visit to GP (January) who ordered xrays, then back to the GP who referred us to the specialist (approx 6 week wait). At the first specialist appt he measured the curve from the x-ray and ordered an MRI and further more detailed xrays. At the next appt he looked at the results of those and ordered a CT scan on some vertebrae he was concerned about (ordinarily, I don't think a CT scan would have been necessary), once he had those results he conferred with other surgeons as the CT scan had showed Jake had faulty lower vertebrae, then surgery was booked for 23/8. Hope this helps.
Sue
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