Anyone had experience of scoliosis?

[emi's mum]

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[orangebear4]

Thank you everybody. Dd has had to stop doing any exercise, as she gets so exhausted. She is a chorister, and has real problems with all the standing and kneeling they have to do - it doesn't help that she has very low blood pressure too! I hope your dd can avoid surgery emi's mum. Yes, I still think her breathlessness could be due to the lungs being squashed, and I guess no one will ever know if it was that until it's fixed. Meanwhile she still needs to have some more tests on her heart and lungs to make sure she is going to be 100% well before they give her an anesthetic. She has been referred to a second paediatrician for another opinion re this. When you look at her from the back she is all lopsided, her skin is stretched on one side and baggy on the other and one hip is noticeably higher than the other. When they got her to bend forward at the hospital she has a large rib hump on the right hand side. I don't know how we missed this, as she has obviously had it for some time, but she has never been one to complain. We didn't get any choice of surgeons, just went with the one she was referred to. I think we would have to go private to have a choice, and that's not an option for us.

[Hecouldshine]

I am so sorry to hear this orangebear4 I hope she can be singing again soon

It must be a very worrying and frightening time for your dd and you. It sounds like a rapid severe type of scoliosis and I suspect there is little alternative to surgery if she is not to be irrevocably disabled by it. When it is the type that develops so rapidly I don't believe there is time for exercise to counteract its progression. She would be in the very best hands at that hospital. Thinking of you. Keep us posted, wont you. Was she due to do a NYCGB course this summer holiday?

[orangebear4]

Thank you for your reply Hecouldshine. Yes, she still is due to go to NYCGB this summer. At the moment she is on tour in the West Country with the cathedral choir, and I used it as a test really to see if she could manage NYC. However, she keeps contacting me to say she feels ill, which makes me feel helpless, and I'm not sure how she will manage another spell away, although it is only 5 days. Don't think wild horses would keep her away from NYCGB though, however rough she feels!

[riverdancefan]

Sorry me again.....one more link. http://www.dailymail.co.uk/health/artic ... other.html
Princess Eugene was operated on in Stanmore too so they MUST be good. Just look at how beautifully straight she is now.

Stanmore is to orthopaedics as the Marsden is to oncology - it is the best!

[mumamia]

Hi Everyone
I have not been on here for a while as we have had a lot going on my DD to has Scoliosis as a family this has put a lot of pressure on us
because she to has been told that she has to have the operation at stanmore.
Her degree is now 60% on the top and 50% on the bottom aged 16 this has completely knocked her confidence and says she feels like a freek.
She wanted to do musical theatre but would not get accepted because of her disability this was made very clear in 1 audition in front of the whole class.
I have done a lot of reaserch about Princess Eugene and she had a different operation not the rods hers involved false discs being put in which meant that she
has not lost her mobility and although it says she had Scoliosis it never said what her degree was.
She is due to have her operation in October so this has put us in a difficult position as to whether she starts college to do her A levels in September because she will
miss so much of the course.
The college has been so lovely and understanding but I do not think they understand how long she may have off and everyone is different with their recovery.
I fully understand what you are all going through and wish you all the best our DD was also due to take her inter Mod and Tap but even that is not possible now
the surgeon said once the operation has been done no more tap ever because of the shock on the bottom 3 discs we both cried in the corridoor and the surgeon
came running out to comfort her, she also has to have 2 operations in 2 days the second one to remove some discs 2 1/2 weeks in hospital and goodness knows
how long afterwards we will just have to wait and see.
All the best everyone and good luck.
Love Mumamia

[orangebear4]

I'm so sorry to hear your news mumamia. Sounds like we should get together! Pm me if you like.

[mumamia]

I will pm you later i am just popping out.
Kind Regards Mumamia

[Hecouldshine]

Really hope she manages her NYCGB course orangebear4

I'm sorry to hear of your dd's scoliosis as well mumamia. It sounds awful

[mumamia]

Hi
Thank you for your kind words we are all trying to come to terms with it we will just have to wait and see what happens.
Regards
Mumamia

[orangebear4]

Just to update everyone, We now have a date for dd's operation to straighten and fuse her spine at the Royal National Orthopaedic Hospital. She goes in on Sunday 8th December for her op on the 9th, and will be in for approx 10 days.

[dodgepot]

Hoping everything goes as well as it possibly can for her and you can both look forward to a more optimistic Christmas and beyond. Thinking of you both xx

[Flosmom]

I'm sure everything will go fine, but just to let you know that we are thinking of you through the next few weeks.What a fabulous Xmas gift to get your DD through her surgery and on the road to recovery.

Mumamia - hope everything went well for your DD in October.

Deb x

[Hecouldshine]

Please post to let us know how she is getting on post op. Thinking of you all

[emi's mum]

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