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Posted by christine (U10806837) on Friday, 11th January 2008
My daughter Emma is 11 years old and last March underwent corrective scoliosis (curvature of the spine)surgery for an S curve of 80 degrees and 70 degrees which had been diagnosed the previous March. After a traumatic time, physically and mentally, she is now doing very well and has gained in confidence as well as height. She has started a petition to try and get schools in the UK to test children for scoliosis to try and detect the problem before it gets to the need for surgery. The doctor has said that Emma has probably had scoliosis for the past 5 or 6 years and if she had done the forward bend test it could have been diagnosed earlier. Her sister who is 6 has now been diagnosed with scoliosis, although mild they are keeping an eye on it to see if it progresses like Emma's.
Emma would much appreciate if everyone could take a couple of minutes out of their time to sign her petition which she intends to give to the Prime Minister to raise this awareness. The petition can be found at www.thepetitionsite.com/1/start-testing-for-scoliosis-in-schools
Many thanks and a Happy and Healthy New Year to all. Christine, Emma and Megan
Posted by Swift (U4972464) on Monday, 14th January 2008
Good luck to Emma - I know my school did test as I remember the posters in the first aid room...but that was a few years ago!
Posted by UnflusterableTig (U3789091) on Monday, 14th January 2008
Good luck Emma. I have lifelong scoliosis, unfortunately the not operable type. It's such a simple thing to diagnose, it should be done during the usual health checks that kids have these days. I support your idea.
Posted by SpocksSister (U10082274) on Tuesday, 29th January 2008
when I was at school they checked us for scoliosis..but not til we were 11 or 12.
I think they are cutting back on a lot of tests anyway. The sight tests at 6 or 7 have gone round our way. They just send a letter out advising you to get your child's sight tested now.
Good luck with your petition.
Posted by twinsmum (U1334068) on Saturday, 31st May 2008
I thought all the schools in this country checked for scoliosis
the above organisation ran a watch that back campaign years ago I supplied some of the posters through the school nurses, its also a good place to find out more about scoliosis.
My 40 year old daughter had surgery for it many years ago.
Posted by mcfadgie (U12166047) on Monday, 2nd June 2008
Just to wish you all the very best with your petition in regards to scoliosis. I have spinal stenosis/spina bifida occultta. It was not noticed until I was 27 years old and has become a big problem lately. So I belief in what you hope to achieve and I am very happy to put my name to your petition. GOOD LUCK and GOD BLESS
Posted by i_amShantaE (U12276320) on Tuesday, 10th June 2008
So glad that Emma is doing well and trying to raise awareness for others. I think I read about your petition in the SAUK Backbone newsletter. I will definitely sign up.
I'm an 36 year old woman with scoliosis (never had surgery) and it was never tested for in my school days. I don't think schools were even aware of it. Things definitely need to change!
Other people with scoliosis might be interested in my scoliosis blog at email@example.com
Posted by lovebeth67 (U12461575) on Tuesday, 24th June 2008
hi my name is ezabeth mcdaniel as growing up and goin to school i was liveing my life fine until i was 18 years old and i found out i had scoliosis. they said i was fine and there was not much they could do. i am 20 years old now and i am dealing with so much pain in my back leg i cant work i cant be on my feet long i cant even walk for 5 minutes with out my back and leg hurting i dont kno what to do i cant work my back is just getting worse.
Posted by UnflusterableTig (U3789091) on Tuesday, 24th June 2008
How long is it since you were seen by a specialist? (I'm guessing 2 years...)
It might be worth asking your GP to refer you for a follow up. Even if there is "nothing" they can do, they can help you manage the condition with physio and pain killers.
I can empathise with you... Try to maintain the strength in the muscles which support your back. Keep moving.
The best thing my Mum ever did for me as I grew up was keep yelling "Sit up straight put your shoulders back!".
Try to hold yourself up and straight as possible, develop as good a posture as you can, this will keep the muscles working and will in time help ease some of the discomfort you do have.
Posted by sophieria (U12489232) on Thursday, 26th June 2008
Hi Christine, Emma and Megan
My daughter Ria is 13 and just today was diagosed by our consultant with scoliosis. We are completley new to this and Ria is constantly being looked at by coaches/pe teachers etc as she is exceptionally sporty, is swimming for the County etc always used by the school for all their A team sports. Nobody picked it up. I am more than happy to sign your petition. We only just spotted her right shoulder blade sticking out last week at the dinner table and though it was just bad posture but checked it with the GP anyway. We have moved swiftly with this to find that she has an S curve of 46 degrees and 32 degrees.
The consultant has said it will just need monitoring for the moment to see how it progresses and he will see her again in 3-4 months he seems calm and not concerned. As you can imagine I am tearing my hair out as these degrees seem high right now from what I have read.
May I ask, was Emma's surgery sugested quite early on after she had been diagnosed?
Posted by brainysurvivor (U12539984) on Tuesday, 1st July 2008
I think it is fantastic you have got a petition together. Did you know that the government has plans to reintroduce school nurses? We need to make sure they do scoliosis screening as part of their job.
Please get in touch with me if you want to pursue this further.
And best of luck with the campaign,
Madeleine Holt, scoliosis sufferer/Culture correspondent, BBC Newsnight
Posted by fiestyshoshana (U12618538) on Wednesday, 9th July 2008
I am all for this Emma , God bless you and lets get screening again in the UK
Posted by shameme (U13160526) on Sunday, 24th August 2008
Hello, i ve just joined here and hope im not doing anything wrong but i suffer from Scoliosis and would really like contact with someone else with it, my email address is [Personal details removed by Moderator] I am a 27 year old girl and live in West Yorkshire. Feel free to contact me.
Posted by dis1dat1 (U12738316) on Sunday, 24th August 2008
scoliosis is suprising common and I was never tested but like most people I know was diagnosed while seeing a doctor for something else, he was checking my chest and he asked if I knew I had it. It didn`t realy bother me but I was aware it was visable so I tried to hide it but then at 23 I was in a horrific car accident and my lower back and pelvis wer broken/crushed which left me disabled and my latest orthopod told me last week that being a wheelchair user has made it much worse and I try to get around the house on crutches and this also has made it worse and my neurologist can`t help either. I know have only one limb without nerve damage severe root canal stenosis the length of my spine, no intervertabrle spaces and herniated discs in my neck, to name just some of the things I have.
I dont`t know if screening would have helped me but my 19 year old daughter has pins and needles in her arms but won`t let anyone examine her and scoliosis runs in familys so i`m worried about her. Also in the passed monthe I have heard about another teenager getting diagnosed by her GP and it upset her and her family the way it was done, she was told she would end up in a wheelchair which is exactly what was said to my uncle when he was diagnosed and I hope any campaign would help stop this kind of upsetting diagnosis its bad enought to be told you have a condition but it should be handled delicatley. you have my full support in your campaign
Posted by paulifaceuk (U13179882) on Tuesday, 26th August 2008
Thank you Emma! I'm very glad to hear you are feeling better. I would like you to know I have a curvature of 57 and 42. However, my condition was not recognised, it was misdiagnosed and I am feeling the negative sides from that.
You are right about screening in schools, but I think that the Doctors should diagnose the condition when you see him/her in a general check up. I was even telling my Doctor that I was in pain, he/she put it to other things. I think it should be more aware to the GP's as well as schools.
You are doing a great job, and I am happy to sign your petition. Please keep us updated with your progress. Thank you once again. You take care.
Posted by christine (U10806837) on Thursday, 28th August 2008
Sorry about the delay in replying, haven't checked the boards for a while.
Emma was diagnosed in March 2006, her curves were approximately 55 and 45. Her surgeon was very open with us and said Emma would definitely need surgery but would try and put off as long as possible. By November 2006 her curves had progressed and said she needed the surgery as soon as possible. He wanted to do it before December but she asked if it could wait until after her 11th birthday in January. He agreed and after a few false starts took place in March 2007. Her right shoulder blade also stuck out.
Emma's consultant was fantastic, full of reassurance and spoke directly to Emma. I had total faith in him and the surgery went better than anyone expected ending up with curves of about 20 and 18 degrees which was better than Mr Fender expected, he thought he could get them down from 80 to about 40.
I know how traumatic a time you are all going through and how it is all a waiting game. Try to be strong and ask your consultant any questions you need to. You might be interested in a forum/group on yahoo.com called scoliosisnutty which is full of information and has members all over the world. I found a need to gather together as much information as possible and was always on the net.
Have you any other children? Have they been checked out? I have another daughter, Megan, who is 7 and last year I noticed one of her shoulders was higher than the other - I took her along to Emma's next check-up and found out that Megan too has scoliosis, only a very mild curve but now they are keeping a check on her.
From what I have read Ria's curves are bordering on the need for surgery. I think the surgeons try and wait as long as possible to give the spine the chance to grow before fusion takes place.
How is Ria coping with the diagnosis? Emma struggled to come to terms with it, and when it came to the surgery she didn't want it done but didn't have a choice. Now 18 months after surgery she can't imagine how her life would have been without having had the operation. She is a stronger person because of it.
We all wish Ria and your family best wishes for the future and please ask any other questions you need to, I will make sure I keep checking the boards regularly. Christine
Posted by christine (U10806837) on Thursday, 28th August 2008
Hi Madeleine, sorry for the delay in replying, I haven't checked the boards for quite a while. I have just been in touch with Rebecca and given the go-ahead for the link. Good luck with the site. Christine
Posted by christine (U10806837) on Thursday, 28th August 2008
I am sorry to hear about what you have been through.
I am also surprised that this teenager was given the diagnosis in such a way by her GP. He/she needs a referral to a specialist spinal surgeon who can assess their curves and then decide treatment or monitoring. There is no way that their GP can foresee their future as living in a wheelchair. Emma's curves were 80 and 70 degrees when she had surgery but at no point did her consultant say she would end up in a wheelchair. Best wishes, Christine.
Posted by christine (U10806837) on Thursday, 28th August 2008
Emma is doing well and does not need another check up with her consultant until next August. The fusion is 100% successful.
Yes GPs need to be fully aware of what to look for but both my daughters, Emma and Megan (who has since been diagnosed with mild scoliosis by Emma's consultant) had numerous appointments with their GPs and in Megan's case paediatricians for other medical conditions yet their spines were never looked at. I had only read in a magazine about scoliosis before Emma's diagnosis, I did not know what to look out for but believe that parents should be made more aware of scoliosis and how to check for it.
Thank you for signing Emma's petition.
Posted by kazzaj69 (U8995866) on Thursday, 4th September 2008
My daughter, Abbi, was diagnosed with scoliosis at the end of May and she is due to have surgery in 3 weeks time. Her curve is 58 degrees. We are all extremely worried about the next few weeks. Anyone else who is due to have surgery soon? It would be great to speak to people who are feeling the way we are.
I am also only too happy to sign the petition. I noticed my daughter's curve quite by chance and then punished myself for not noticing it sooner. I also have a 6 year old daughter and check her weekly now.
Posted by christine (U10806837) on Saturday, 6th September 2008
Many thanks for signing Emma's petition we have approximately 750 signatures now on both petitions but still need a lot more to take to the government. I too punished myself that I had not noticed Emma's curve and still can't understand how I couldn't see it, but really how often do children bend down (as in Adam's forward bend test). Don't punish yourself. I understand how stressful the next few months will be for your daughter and the whole family. How old is Abbi? There is a great forum on yahoo - scoliosisnutty - which is good for information and reassurance - the lady who runs it lives in Spain but is British and there are members all over the world. It is now 18 months since Emma's operation and believe me there is no comparison in the way Emma was to now. She not only grew by 3 inches but her confidence in herself grew also. Megan is now 7 and I spotted her scoliosis because I now know what to look out for (one of her shoulders was higher than the other but she does not have a rib hump). Her curve is mild and is now being reviewed yearly to notice any changes. Best wishes to Abbi and all your family for the future. Christine
Posted by kazzaj69 (U8995866) on Monday, 8th September 2008
Abbi is 14 today, so trying to make her birthday extra special to help make up for the next few months. She is coping so well, I am extremely proud of her but now the date is getting so close (she has surgery on 27 September) it's constantly on all of our minds. My younger daughter Jenna is 6, but I check her every week.
Thanks for your support and good luck with the petition.
Posted by emma5287 (U11194268) on Tuesday, 23rd September 2008
I had scoliosis correction surgery 7 years ago. Had fusion and rods, i'm much better now posture wise.
Posted by christine (U10806837) on Wednesday, 24th September 2008
Glad to hear you are better with your posture. It's good to hear of someone who is 7 years post op and doing OK. Emma is only 18 months after op, just started doing PE again and finding back muscles having to walk hard. She's got a petition going to try and get testing started back in schools to detect scoliosis early on. Google scoliosis testing in schools and it will bring it up on the petition site or Gillian McKeith's website also has Emma's petition.
Thanks for the message, Christine
Posted by christine (U10806837) on Wednesday, 24th September 2008
Best wishes for your operation Abbi,
Christine, Emma and Megan x
Posted by kazzaj69 (U8995866) on Wednesday, 24th September 2008
Thank you so much. It's now two days prior to admission and we are all very worried and nervous. Trying to think that by this time next week she will hopefully be starting to think about coming home again.
I really appreciate your good wishes and will let you know in a few weeks how she is going on.
Posted by Scoli-1991 (U13418130) on Thursday, 25th September 2008
I have a 43 degree curve- scoliosis. And also 70 degree kyphosis.
I do not know whether I want the surgery or not, I am seeing my specialist in a weeks time, and he will give me the verdict of whether my curves have got worse or not.
Keep us updated on how the surgery goes!
Posted by emma5287 (U11194268) on Thursday, 25th September 2008
I'm sorry my message was a bit woolly. I hadn't had my speech programme for a couple of days so I was typing. I don't know whether Emma is in a wheelchair or not, but I am and I must say that the added to my height when I had my operation. Do you know what hospital she is going to?
I was in hospital for a week when I had my operation, but then I had to go back in because I had a wound infection and then I was in for a week then.
If you need any more information, or she wants just someone to talk to about the operation, just give me a shout
Posted by Rantingmum (U13468880) on Wednesday, 1st October 2008
I am going to sign your petition as I have witnessed first hand how these things can get overlooked when you are dependant of local community services and in particluar those based in schools.
My son aquired a severe brain injury following a cardiac arrest 2 years ago when he was just 6, he has been left severely disabled and wheelchair dependant. Due to poor positioning and no wheelchair for first 3 months following his injury and a make do one for the following 3 he developed a 'S' curve scoliosis ( I know it would have happened to some extent anyway), However from March this year I have sought the services of a chiropracter (McTimoney) locally who in conjunction with his orth. consulant started to manipulate my son's spine. He now has a 'C'curve which is better and he maintains that now with a monthly visit, we also have a better chair with a moulded seat to replace the support of his spinal jacket, it also helped with enabling him to show some emotions.
He sees a physio at school once a week and has done since Sept 2007, in January this year we had a meeting to look at lycra suits with other more specialsed physios and with me present, one of them asked me if he has scoliosis and before I could answer (only just had review so I was fully informed) his usual physio said no!!! and she had seen him once a week for almost 4 months!!
I have come to learn not to rely or depend totallyon such people but to seek alternatives too, keeping an open mind and just keep on top of all aspects of my son's care and needs as you can't depend or rely on anyone else. This is only my experience and I do hope that there are loads of kids out there not being let down as I know that there are some people doing good work, just not where I have the mis-fortune to live.
Ranting mum by name and nature.
Posted by christine (U10806837) on Thursday, 2nd October 2008
Thank you very much for signing the petition. I am so sorry that your son has been so let down. You have to fight for your children's rights because if you don't nobody will. All the best for the future.
Posted by kazzaj69 (U8995866) on Monday, 13th October 2008
Abbi had the operation. It all went incredibly well. Whilst the day of the operation itself was by far the worst day of my life, she came home after only 5 days and now, two weeks on, she is doing fabulously. Her scar is 12 inches long but extremely neat, she has grown 2 inches. At the moment she is still a bit down and tearful but every day sees some improvement.
Thanks to everyone for your support.
Posted by christine (U10806837) on Tuesday, 14th October 2008
Great to hear Abbi's operation went well. She'll go from strength to strength now. Keep us updated on her progress.
All our best wishes Christine, Emma and Megan.
Posted by kazzaj69 (U8995866) on Thursday, 6th November 2008
It's now almost 6 weeks since Abbi had her operation. Yesterday we saw the Consultant for her post-op review and she had some more x-rays taken. She is doing wonderfully well. She is back at school and doing pretty much everything she was doing before, apart from sports. She gets hardly any pain now, and other than some numbness to the top of her back, very little symptoms at all. The rib hump has reduced greatly. Considering where we were only a few weeks ago, she has made a remarkable recovery and we have no regrets whatsoever about the surgery.
Posted by champagnesue (U957601) on Saturday, 8th November 2008
Stumbled upon this quite by chance .. my daughter (14) is having her op at RNOH Stanmore this time next week for a 70+% curve. We put it down to bad posture at first and I blame myself
So great to hear that 5-7 days later she might be home !
So pleased to hear how well others are doing, too, v encouraging.
Posted by christine (U10806837) on Monday, 10th November 2008
Great news about Abbi. She is doing extremely well. She sounds like a remarkable young girl.
Posted by christine (U10806837) on Monday, 10th November 2008
Please stop blaming yourself, I went through the same feelings as yourself but it does no good. The signs for scoliosis just seem to appear from nowhere. The consultant told me that Emma had probably had the curves half her life (since the age of 5) but I didn't notice anything and I am a very observant parent. All of a sudden, after a fall at school, there was a hump on her back.
Emma had an S curve of 80 and 70 and now her curves are only about 20 and 18. It is amazing what the doctors can do. She is 19 months post op and apart from gymnastics joins in everything else.
We all send your daughter our best wishes for a speedy recovery for next week.
Christine, Emma and Megan x
Posted by champagnesue (U957601) on Monday, 10th November 2008
Thank you so much x
We have th pre-op tomorrow, and on Saturday she;s having the op. We have every faith in Mr Tucker, hersurgeon, but cant help feeling scared !
We saw you on the news, the awareness you are raising is so important, I dont think my friends realise how much they should look at their girls, keep it up, and thanks for your kind words
I'll let you know how we get on xxx
Posted by kazzaj69 (U8995866) on Tuesday, 11th November 2008
Hi Christine. Thanks for your comments. It actually brought a lump to my throat. Abbi is remarkable and we are all extremely proud of her. To think that this time 6 weeks ago she was only two days out of intensive care and now she is back at school full time.
Champers - I too blamed myself and I think all parents do. It's hard to believe that you can miss something like that, but we did. It was as if it appeared out of nowhere.
I hope all goes well for you all at the weekend. It will be a tough few days but worth it in the end.
Please let us know how things progress and my thoughts will most definitely be with you.
Posted by champagnesue (U957601) on Wednesday, 12th November 2008
Have discovered just yesterday and just a few days short of admission that Amy needs not one but two operations, two three hour ops at Stanmore. Am feeling very scared and tearful. Amy on the other hand is amazing !
Will keep you all updated specially in case any one else is about to go through this because I know I feel very alone and without info.
Thanks for all the good wishes
Posted by christine (U10806837) on Thursday, 13th November 2008
You must feel devastated about this last minute change. I have heard about others having to have 2 operations. Can't remember where I read it. Worth looking at this group I belong to on Yahoo - it's called Scoliosisnutty (run by an English lady who now lives in Spain), very useful group with lots of information - she also has her own website scoliosisnutty.com. Hope you can find someone else out there who has gone through the same as Amy is going to - you will then not feel so alone. I know you will get through this and be a great support in the coming months for Amy. She is a very brave girl. You must take care of yourself and rest whenever possible because the next few weeks will be physically and mentally draining for you. Make sure you take up any offers of help from friends and family and even if it's for a quick coffee or walk outside grab a few minutes break away. We all have Amy and yourself in our thoughts and wish Amy a speedy recovery. I know it is hard just before the op to think ahead, I couldn't, but please take my word for it that these operations will give Amy a new lease of life and a great deal of confidence in herself. Emma is a different girl from the shy embarrassed pre op one.
Christine, Emma and Megan
Posted by champagnesue (U957601) on Friday, 28th November 2008
Amy is home ... and she has a straight back now; it's amazing . Stewart Tucker and his team are worth their weight in gold I do not think they will ever understand how much we owe to them.
There were many girls at Stanmore with scoliosis; most of then needed the two step op & iI am surprised you hadnt encountered that before. Many of them were hospitalised for 2 and a half weeks at least. Amy was fortunate n that Mr Tucker was such a brilliant surgeon -he and his team performed the anterior & posterior AND the cosmetic surgery in just 5 hours. I am eternally grateful to him. Although were it not for the fact I had Benenden private healthcare we would never have found him and we would have been saddled with some random bloke who wasnt experienced in scoliosis, at Addenbrookes :-S
Her spine is straight and she is 3 inches taller. A huge thank you to al the Stanmore nurses - you were wonderful.
It was the hardest time of my life but it was worth it xxx
Posted by kazzaj69 (U8995866) on Monday, 1st December 2008
So pleased to hear everything went well. It is the worst time, and very hard to deal with but the progress now will astound you.
It is 2 months since Abbi had her operation and on Saturday night we went to a birthday party and she spent the night on the dance floor!!
We have regular reviews, our second is in 2 weeks. The post-op x-rays are incredible.
Good luck to you all and here's to the future.
Posted by hallenton5 (U13733380) on Tuesday, 9th December 2008
Thank you for replying. Our consultant at the second measurment, when Ria's curvature had increased by 6% in a matter of 12 weeks, then referred us to the Consultant Surgeon at St Georges Hospital in London, whom we are now seeing. We have had a very open discussion and the indications are that she will need the surgery as the curvature is galloping ahead and well over 50% now since diagnosed in June. We felt a little better as he was very positive and very reasuring and like your consultant spoke directly to Ria and was really lovely. We did not ask when the surgery might be, as she is to have the MRI scan very soon and we then meet again early February 09 to take another measurent. Our older daughter Sophie (17) does not have scholiosis. Ria seems fine, she is not really asking any questions at all, so in between consultations we are not really discussing it, as she seemed so wrapped up in her busy sporty life and school (not sure whether this is right or wrong?) Her priority appears to be to make sure she does not miss any of her sport or social life because of appointments etc and would have me change one if it clashed at all. He did say she would probably not be able to do contact sports again, which is a huge blow and will be to Ria if that is the case. My husband says, "'we'll see". I remain so scared at the thought of her having spinal surgery and desperately hope she will be able to get back to some of her sports as soon as is possible, as she is so competitive and this being taken away even for a period of time will frustrate her terribly. She is very fit and a fighter so hopefully this will put her in good stead post op.
How are Emma and Megan doing?
Posted by champagnesue (U957601) on Thursday, 11th December 2008
I know your message wasnt directed at me but I cant help but respond.
My daughter is in recovery at home after a 5 hour two-in one anterior/posterior op to correct a 75% curve which happened so quickly we hardly had time to take it in. She gave up her 10 yrs of dance classes through embarrassment at her rib hump. She is now wearing a rigid brace as her spine fuses.
It;s not really about whether your daughter wants to play sports is it ? Its about whether or not NOT having surgery will have a negative impact on the rest of her life, isnt it ? In our case it was YES, she needs this done, and I have no regrets. No it isnt easy. What in life that is worth it, is ?
Best thing you can do is take advice from your consultant though but you really arent alone -at Stanmore there were many many Mums like us xx
Posted by christine (U10806837) on Sunday, 14th December 2008
Ria's attitude to all of this is fantastic and will put her in good stead for a quicker recovery. She sounds like a fighter who is not letting this change her life. Good on her! Emma was only just turned 11 when she had her surgery and didn't have the same attitude - she was more angry than anything else, but still made a quick recovery. As I say all the time, it has changed her, but for the better, she is a much stronger person than before who copes with anything that life has to throw at her. Emma started doing PE over 12 months after having the op - she could have started earlier but does in fact hate PE. She does all the usual - badminton, netball, running - the only thing she doesn't do is gymnastics - her spine is completely fused so can't bend. Her PE teacher is great and says that Emma is the best guide to what she can and can't do so leaves it up to Emma to decide. She does have a slight fear of netball - just because of the force the other girls throw it - although nothing can now go wrong with the bone graft. I am sure Ria will recover well and get back to all the sports she loves - I have read several stories on the net about other girls who have had the op and get back as quick as they can to dance, PE and in some cases gymnastics. Keep us posted about Ria, her MRI scan and appointment in February - I think it's best to get the op sooner rather than later, Emma's curves were 80 and 70 degrees by the time she had her op and it was affecting her breathing and she was getting a lot of aches and pains. Best wishes, hope you all have a lovely Christmas.
Posted by RoseRodent (U1896879) on Friday, 16th January 2009
I know a lot has happened since the OP, but just to say if you are petitioning to reinstate the test then I'd say make sure to petition for some proper procedure for something to be *done* with the results. I remember my school medical way back when finding I had a curve and then them doing absolutely nothing. Not until 2008 did I find out that although it's a small curve it has caused the vast majority of my pain throughout my life, and then I suddenly remembered this bend test from school and them spending ages looking at me and discussing.
They had decided to do nothing and tell nobody because it was only a small curvature, but a small one with lots of symptoms is important, a small one can become a big one, and your doctor should be made aware you have a small curvature even if they never want to do anything at all about it! There's no point doing the test only to decide to do nothing with the result.
Posted by kaviha (U13815004) on Wednesday, 4th February 2009
I happened upon these message boards and thought could give some reassurance. I had corrective surgery for scoliosis when I was 12 . That was some 32 years ago. The surgery did not stop me doing any of the sporty things I enjoyed then netball, tennis ,trampolining , or taking up new ones in later life. I horse ride at least twice a week and have done since I was 13 (and have fallen off many times) I go skiing,ice skating and still play the odd game of netball
I have 3 children and had no back problems during the pregancies or any since (my youngest is now 11) although some times on a cold day when i'm cheering from the touchline I get the odd ache but that could also be my age.
I think my parents were very brave to opt for surgery all thoses years ago but all I can say is I 'm glad they did .
I wish you all and your girls the very best and hope they make speedy recoveries
Posted by christine (U10806837) on Friday, 6th February 2009
Thank you Kai for your reassurances. It is so good to hear from someone who went through the surgery such a long time ago and is doing so well.
Emma is nearly 2 years post op and still suffers from back aches and leg aches. She is going back to her consultant for a check up shortly. I think the pains could be caused by a discrepancy in her leg length which affects the way she walks and stands.
Emma has started a petition to get children tested for scoliosis while in school. Could you please spread the word about it, the more signatures she can get the more chance the government will take notice.
There are still lot of children out there who are not getting diagnosed until it is too late for bracing and the need for urgent surgery as in Emma's case.
You can sign the petition at: thepetitionsite.com/1/start-testing-for-scoliosis-in-schools
All signatures are greatly appreciated by both Emma and myself.
Once again, thanks for your reassurances.
Posted by patsi57 (U13815170) on Sunday, 15th February 2009
Hi there , my grandaughter is three now and she had a rod inserted in her back when she was 2 years old. Her curve was 82 degrees, We had been saying she wasn't standing properly for a while but nobody listened and thought it only positional
. To set your mind at rest kazzaj69 she coped really well and now she wears a spinal brace and will till she is a teenager when they will fuse her spine.
She is a very bright outward going child and does not think she is any different to anyone else. I know that may change when she is a little older but we will cross that bridge later. In the meanwhilw we will just try and build up her confidence so as she can deal with any difficulties later.
.she is a super little girl and we all love her to bits. patsi
Posted by madmum2816 (U13850009) on Friday, 27th February 2009
I am just reading all the messages about scoliosis surgery and they have given me such hope. My lovely 15 year old son Cameron is likely to be having surgery this year. I do not know where yet - we live in Surrey. Either at St Thomas's in London or Stanmore. He gets really down and tearful at times and it is so hard trying to be positive for him. His transition into adulthood with it's associated body image problems is really taking its toll.
My husband and I feel scared about what is to come. Cam wants the surgery but we are frightened about what it will entail and the risks.
How do you get through it? What is the best way to make Cam feel better about himself? This is the hardest year of our lives so far.
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