NotaPushyMum.Com

Hi everyone so sorry CanCan to hear about your DD we know exactly how you feel I have not posted an update on here because of what orangebear is going through at the moment my DD and myself are going through the stage of regret at the moment but this is normal according to the scoliosis site the recovery is very hard for the patient and the carer because they really can't do hardly anything for themselves
DD is still in a lot of pain and on painkillers still numb down one side of her body surgeon said this should go soon
DD had to have the op or she would have ended up in a wheelchair her degree for the top curve was 60degrees and bottom 55 degrees but I think they were more than that by the time she had the operations we were told that she now has zero degree the most straight back you have ever seen
We have no idea was she will be able to do once the brace comes off in March she did get a call up for a feature part went for fitting agent knew about the brace and said it would be ok went for fitting but the costume was so heavy it hurt h e r back so production said they could not take the chance this did upset both of us but we know that once this is all over this will all be a distant memory but hard to see at the moment
DD was very active before op at full time drama school so this aS very hard for to accept but we had no choice in the matter.
CanCan what degree is your DD and have you been told where she will be fused because this will make a big difference to how much they can bend afterwards my DD was fused T2_L3 that only leaves a small area like the lumber region but the area left she wad also told she has spina bifida so a double whammy for her everyday will get better the only advise that my DD has said ask the surgeon if it will get any worse if the answer is yes then do not leave it to late because the older you get the harder it is to correct and the recovery is much longer
I will try to answer any questions you have as best I can I know if you Google about dancing after spinal op there is an American girl who is amazing but she was not fused as much as my DD so it really does depend
I wish you all the best on what ever you choose and also all the best to transverse
Miami's xx

Sorry not good on computers it keeps pretexting I meant dabdab and orangebear
Mumamia x

Thanks Hecouldshine for the link on the other thread and thank you Mummamia for your candid response-can I ask when your daughter had her op please? I don't know the numbers but my daughter has a lumbar curve-they wouldn't do the the top I don't think because that is not too bad. The lumbar curve is 52 degrees and quite long. The problem is she has no pain (at the moment) so I am so worried about her having all the pain afterwards and as she is in lower sixth I haven't got a clue when the 'right' time would be. We have even considered schroth method physio (don't know if u have heard of it ). I wish you and your daughter all the best x

My daughter had her 1st op 24th Sep and 2nd op 1st Oct she had it done at the national orthopaedic stanmore under mr Layhovskey DD did not have much pain to start with but it increased the bigger the degree
Has her surgeon said to you if he thinks the curve will get worse this would of had an impact on our decision but this was not meant to be for us. I have heard of the Schroth but do not know much about it if you go onto the scoliosis forum you will find a lot of information about the Schroth method I think this would be a great help to your family and DD.
As to when to go ahead I can only say taking all things into account has your DD finished growing her surgeon should be able to tell you how long has she started her periods my DD started very late 16 this did not help the condition and does he think the curve will increase
Most of the children also loose a lot of weight during the operation so they have to try and build up their stamina again this is hard because they can't do any exercise for no. 6 months but all that said I know at the moment we have regrets as I said before but we will look back on this in a few months time when the brace comes off and will be so glad that she had the operation.
I wish your DD all the best you can ask me anything I don't mind I am quite up front and will say it how it is I just wish I had had somebody that you d have told mm e so we would have been more prepared.
As to the pain that my DD is having it is not the Scoliosis pain that she had before but pain from the operations itself
All the best mumamia

My daughter is 16 and she only started her periods late last year-they think she has a tiny bit more growing-she is already 5ft 8 but we have got x-rays straight after xmas and I think that will be crunch-time. At the moment she is refusing to have the op as it is not life-threatening and she is in no pain, but she and I both know that she WILL have to have it done at some point. The consultant has said people live with the condition but of course it will only get gradually worse and by 50 years old she could have an 80 degree curve and if she leaves it til after the age of 20 the recovery is much harder. I feel like she should have it now and move on with her life. She is a fabulous dancer and wants to go to performing arts school making the decision all the more harder as an op would certainly end that dream

Hi dabdab your daughter is the same age as mine but mine is only 5ft 3 1/2 grown 1 1/2 inches after the op what I will say is as the degree gets worse she will find dancing will become harder to do and balance will become a problem DD was quite good at dancing in the beginning and had a good voice but all this changed confidence being constantly knocked her lung compasity was reduced as well
Her voice is now much higher so maybe she may go back to it thankfully it is acting that she wants to do we will just have to wait and see.
When I joined the scoliosis forum i received a book and there was a young girl in there that had the operation and went onto. full time theatre school so please tell your daughter to not rule that out.
What is she doing at the moment my daughter is doing art and photography because this was our only option considering the operations.
DD did audition for college before we knew that she needed the operation but was shown up in front of the whole class she did all the exercises that everyone else did but was then told to sit on the floor with legs in front and put chest on her knees this she did but of course the whole class saw her back these were all her friends that she had been with since she was 11 but not one of them knew that she had scoliosis she ran out of the audition to the toilet and rung me crying saying I want to come home.
We have not looked back since the day she left and not one friend has contacted her they do not even know she has had the operation she has made more friends in a few weeks at college than she did the whole time at school.
Sorry to rant just sometimes need to get off my chest what I am feeling one thing DD does say is I no longer have scoliosis.
I have the before and after pictures and videos of her in hospital but she does not want them put on YouTube is there any other way that I can let nappamums see the pictures I am no good with all this technology.
Your daughter will know when the time is right but I think I agree with you good luck with what ever you decide make use you find out the exact degree and where they would fuse in the lumber region as this is where most of our mobility comes from.
What hospital are you under if housing mind me asking
Mumamia

Mummamia-what you have been through is really tough but it sounds as though you and your daughter have made the right decision. I wanted to let you know that I have a friend whose son had a severe double curve and he had the op a year ago. His mum says it was the best decision they ever made and they have no regrets. I also know of another boy who has had 2 ops (the first one at age 12 the second at age 16 ) and he is a terrific tennis player by all acounts. It must be hard at the moment but you have now come through the worst and at least you can 'move on'-deep down that's what I want too. I want my daughter to have the op and move forward but it is going to take a lot of convincing x

Thank you all for your good wishes. Came out of hospital today, and she is recovering well, after what I can only describe as the most stressful week of our lives! Nothing can prepare you for it - the relief when after 6 hours they called me to go to her on the High Dependency Unit, the sudden deterioration on the 2nd day which lasted until Friday when she suddenly picked up and started walking and sitting in the chair, and then rapidly improved so that she could come home today. She is in a brace for 3 months, but coping well with the pain. The only time she cried in the whole experience was when the hospital bed collapsed the day after the op and jolted her severely. She has been SO brave and so extremely strong and I could burst with pride right now in a way I have never experienced after any performance she has done. When did she get to be such an incredibly wonderful young lady?!

So glad to hear from you orangebear4. Well done to you all, especially your dd, for getting through a very tough sounding week. I hope her convalescence goes smoothly now and you can enjoy Christmas, and then on to an exciting 2014

I'm so glad that she's doing well. Can't believe the bed collapsed - I hope you complained. She sounds like an incredibly brave young lady and her experiences recently will help her be even stronger no matter what she ends up doing. My best wishes to you too - it must have been as terrible week for you, when all you want to do is cry and you have to be the strong one to get the rest of the family through it. We will keep you in our thoughts, and I hope you all get to have some rest and recuperation over the Christmas holidays x

Orangebear-you and your daughter are doing amazingly-I am full of admiration for you both and now you can move on. Best wishes to you both. Dabdab

Thanks all. Just wanted to say dabdab, that we came to the conclusion that it had to be done, so we might as well get on and do it. You are right, there is no best time as it will disrupt their schooling and lives whenever it happens. Dd is in Year 11 - luckily she took 8 of her GCSE's last year, and has got a place at the Purcell School for sixth form where they are not asking for any academic qualifications, but she is taking another 5 GCSE's and 3 AS levels this year. She is missing her mocks in January as they have to have about 6 weeks off school afterwards. It's funny how things take on a different perspective once you just go ahead really as all you want is for your child to be well again. I suppose it was an easier decision for us as she had been unwell for about 7 months beforehand. I hope you come to decision you are all happy with soon.
Mumamia, did you say that your dd has now got no curve at all? If so, that's amazing! My dd was fused T2 - L1, single stage posterior - she had 3 curves, 46, 73, 47 degrees, and is now 80% corrected.
One good thing has come out of this, dd's singing voice has completely lost it's breathiness, due to her lung capacity being restored, and she now sounds even better than before!

dabdab thank you for yours words of encouragement it really does help one thing I will say as dd curve got worse the one thing that really bothered her was clothing nothing fitted her because it would not sit properly on her back this was very clear for me to see when I went in the changing room with so maybe you could mention this to your DD as this could have an impact when she wears a leotard if her curve increased.
orangebear 4 so pleased that your dd is home can't begin to imagine how you must have felt with the bed was you there at the time how did it collapse I know when dd fainted and I was on my own supporting her she twisted her back I was trying to stop her falling on the floor I feel sick when I think about what could of happened to both of their backs.
I think my dd is still in a lot of pain from the 1st op with the ribs being removed and the lung being deflated and the scare where the chest drain was no wonder they do that op 1st to give them a week to recover before the 2nd op.
I think after seeing all the children in hospital and some so young they really are so brave.
I would just like to say a big thank you to all you nappa mums for your support you are the best.
Lots of love mumamia xxx

Just wanted to update you-daughter's curve has not moved since last visit according to x-rays- a bit baffling really as we expected it to have got worse, thereby making the decision easier in some ways to go for op. Now I am in a quandry trying to justify the op then I think we could 'move on' Stuck at 52 deg (lumbar ) and now it's a waiting game..I hope Mumamia and Orange Bear that you are seeing light at the end of the tunnel-would love to hear from you
dabdab x

I have been wondering how both the daughters of Orangebear and Mumamia are getting on after their ops. Our daughter has decided she WILL have the op next year with a view to trying for drama school as opposed to an (unrealistic) course of dance. Have been thinking of you allx