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Old 27-05-2014, 09:11 PM
JJ's Mum JJ's Mum is offline
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Unhappy JJ (13yrs) surgery this Sat- Our journey begins

Hi everyone - this my first ever post on anything like this but my husband and I have found this site so useful in the lead-up to Jaides surgery this week so I wanted to be part if it. Has anyone else found the onset of Scoliosis very aggressive and very fast ? We have found our daughter to have come on since Xmas? The surgery terrifies me !! But I am amazed at how many people know someone that has a similar experience !! The surgery terrifies me! I am so scared for her and what her recovery will be like
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Old 27-05-2014, 09:25 PM
jane jane is offline
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Default Re: JJ (13yrs) surgery this Sat- Our journey begins

yes, the progression is terrifyingly rapid! my daughter went from 50 degrees to 63 degrees in 8 weeks. She saw a doctor about compromised lung function in November 2009' Scoliosis was not picked up then and by Jan 26th 2010 we had 50 degree curvature. The recovery from surgery will test your daughter's strength and your resolve but the surgeons and nurses helping you along the way are amazing and look for all the wonderful recovery stories on this forum which will give you lots of hope and confidence,
best wishes
Jane
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Old 27-05-2014, 10:19 PM
Eliz Eliz is offline
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Default Re: JJ (13yrs) surgery this Sat- Our journey begins

Definitely from me too. We had been to dr with pains in both lower legs when running. Dr didn't exam him very well and it was a music teacher at school who noticed first! By this time it was over 50, in retrospect possibly took 6 months or so.
Best wishes to you with impending surgery, and hi to you jane, good luck to Sophie with year 12! Liz
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Old 27-05-2014, 11:09 PM
DeeElle DeeElle is offline
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Default Re: JJ (13yrs) surgery this Sat- Our journey begins

Yes, it's ridiculously rapid, at least in our case.

I noticed a hump on my 11 yr olds lower spine. We had X-rays and scoliosis diagnosis the next day (December 2013).

We went from 3 curves (biggest 30 degrees): to 40, 30, 30 degrees in 5 months. Surgery is tentatively booked for Xmas when she is 12.

I'm also terrified. I was sweating in the surgeons office and having massive anxiety surges. A week later I've gained some perspective, even if I'm still waking at 5:00 AM with the shakes.

It will be fine. We just need to be strong and support these amazing kids who will make it through, hopefully with minimal effects.
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Old 28-05-2014, 08:33 AM
Shan Shan is offline
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Default Re: JJ (13yrs) surgery this Sat- Our journey begins

Progression was frighteningly quick for my daughter, too. By the time we realised she had scoliosis, she was already at 60 degrees for the main curve. By the time of surgery, it was more than 70 degrees.
The lead up to surgery is hard but these kids are completely amazing and recover much more quickly than any of us parents would facing the same thing.
Very best wishes to you.
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Old 29-05-2014, 03:16 PM
JJ's Mum JJ's Mum is offline
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Default Re: JJ (13yrs) surgery this Sat- Our journey begins

You ladies are amazing THANK YOU so much for replying xx it makes me feel so much better to know that it can be a very rapid onset and it wasn't be being the "bad mum" for not noticing it sooner. JAIDE is upstairs packing her hospital bag as I type and I'm sitting here in tears so touched you lovely ladies replied xx I am so glad I joined this forum. JAIDE too has 3 curves which measured 41,59 and 29 several weeks ago and we anticipate they have worsened since.
I have never been so terrified in my life but I too have heard amazing stories out how amazingly strong our kids are. I wish you all the very best of luck with your journey ahead and am more than happy to keep you all posted we our
Journey especially those that will be in our shoes in the future. Xx
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Old 29-05-2014, 05:41 PM
MAB MAB is offline
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Default Re: JJ (13yrs) surgery this Sat- Our journey begins

Thinking of you over the coming time. As others here have said, it was rapid progression for our son too - spotted and diagnosed in April last year with 3 curves, the largest being 53 deg and progressing to 67 deg at the time of his surgery in August. We are almost at the 12 month mark now and apart from the scar on his back, nobody would know that he had undergone spinal surgery.
I am sure your daughter's strength will get you through this, as so many of our kids did for us. Best wishes.
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Old 30-05-2014, 10:08 PM
jane jane is offline
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Default Re: JJ (13yrs) surgery this Sat- Our journey begins

Glad you don't feel guilty because as Liz and I have said even gp's missed our kid's curves. We got no info in year 6/7 about scoliosis either and of course they don't do checks anymore which is ridiculous because they take such a small amount of time and could be done with immunisations.
Hope you have got some hints for hospital....here are my tips.
- lots of girls get periods even if they are not due so be prepared
- it is not uncommon for the kids to faint when first walking and standing so look out for that
- the kids friends texting at the right time can make those long hard nights easier...my daughter's boyfriend was her saviour (and helped her through when I had run out of ways to distract her)
-try to keep super busy when the surgery is happening - the surgeon thought it was hilarious when I told him I was doing my school programming but it sure helped to pass the time.

Lastly, everyone on the forum will be thinking of you and your daughter as the people who post here are amazing and like family. Every time I posted on here just after surgery there were answers for any concerns I had and lots of love Nd support.
Big hugs to you and to Jaide
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  #9  
Old 01-06-2014, 10:35 PM
JJ's Mum JJ's Mum is offline
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Default Re: JJ (13yrs) surgery this Sat- Our journey begins

Thanks Jane xxxx
She is going ok xx
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  #10  
Old 02-06-2014, 01:46 AM
DeeElle DeeElle is offline
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Default Re: JJ (13yrs) surgery this Sat- Our journey begins

So glad to hear. Keep us posted on her progress. Thinking of you.

Xx
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