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Scoliosis testing in schools in UK

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Messages: 151 - 200 of 339
  • Message 151

    , in reply to message 150.

    Posted by madmum2816 (U13850009) on Sunday, 2nd August 2009

    Hi Sue
    I will pass on your good wishes to the staff.
    Enjoy the rest of your summer hols and I will post with news as soon as I can.
    Take care everyone.
    Tracy, Ian and Cameron and Finlay xxxx

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  • Message 152

    , in reply to message 150.

    Posted by christine (U10806837) on Sunday, 2nd August 2009

    Hi Sue
    Great news to hear Lucy has only got 2 weeks left with her brace. I bet she can't wait.
    Enjoy the rest of the hols.
    Christine, Emma and Megan x

    Report message2

  • Message 153

    , in reply to message 149.

    Posted by gentleladygreeny (U13938496) on Monday, 3rd August 2009

    Tracy and Cam,
    We hope all goes well for you today. Thinking of you.
    Bev & Sara

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  • Message 154

    , in reply to message 153.

    Posted by gentleladygreeny (U13938496) on Tuesday, 4th August 2009

    The hospital rang today. Sara will be having her op on 19th august. They have a gap so it is very short notice, but i have to stay positive for Sara. I have yet to tell her as she is staying at her grandads for a few days and i don't want to spoil her stay. She had quite a few things planned for the rest of the holidays. If we don't take this date we will have to wait a while and obviously we can't do that.
    Bev & Sara

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  • Message 155

    , in reply to message 154.

    Posted by christine (U10806837) on Tuesday, 4th August 2009

    Hi Bev and Sara
    I know how difficult this is but as you say Sara needs to take this date, you just don't know when the next available slot will be. Emma was advised to have her op just before Christmas 2006 but put off having it as she wanted to be able to celebrate Christmas and her birthday in January and in the end after a few false starts it happened at the end of March 2007. Those few months of waiting actually made it harder for Emma and the rest of the family. By the time she finally got the op she was in a very nervous state not made any easier by delaying it several months. Also these few extra months made the curve worse and the pain and breathing difficulties increased.
    The things that Sara has planned - is there any chance she can fit them all in before the 19th, if not can she prioritise which she wants to do and try and do as many as she can. It will help to take her mind off things if she is busy.
    Which hospital is Sara going into? You've probably already mentioned but the memory isn't always very good lol.
    Take care of yourselves and keep us updated.
    Christine, Emma and Megan x

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  • Message 156

    , in reply to message 155.

    Posted by gentleladygreeny (U13938496) on Wednesday, 5th August 2009

    Hi Christine, Emma, Megan
    Thank you so much for your post. After telling Sara today,we had the tears but is she alot calmer now and we are now very positive. We are going to try and do a few things before the op. She had a birthday party to go to after the op and her friend is coming up from cornwall. We are buying her a laptop at the weekend and that seems tobe all she is thinking about at the moment. She will be in the norfolk and norwich hospital. I was worried about my work as i am a big worrier and i am on my annual leave at the moment, so i have had to make some changes which now means i have to work next week. But i then have a fortnight off and a bit more if i need it. I am a rehab carer, so that should come in good use for after the op, although caring for your child is very different
    We are going out this weekend to buy some bits for the stay in hospital.
    I will update soon
    Take care
    Bev & Sara

    Report message6

  • Message 157

    , in reply to message 156.

    Posted by madmum2816 (U13850009) on Thursday, 6th August 2009

    Hello Everyone
    Have managed to use the internet on the adolescent unit at Stanmore Cam had his op on the 4th. Went to sleep at 0900 and woke up at 1800. He has had anterior and posterior spinal fusion plus rib costoplasty to reduce his rib hump. We cannot believe it was all done in one go. On Monday evening we were told he would have to have two ops a week apart, like Lucy. Mr Molloy told us he would see how Cam coped after stage 1 and decide whether to do stage 2. We got a phone call at 1300 to say they were going ahead. What a roller coaster of a time, but he has coped really well with the long surgery.
    We got to see him at 2000 in HDU and he could talk to us. He has a chest drain, catherter and morphine drip but is eating and drinking well, so a lot of those will come out tomorrow hopefully.
    He is a lot more perky today but sleeping a lot still. The staff here are amazing and very reassuring - explaining everything they do.
    We cannot believe the op is over!!
    It is amazing to see how well the children cope with this. There are lots of teenagers with spinal ops on the ward. Cam will need to have a brace for 3-6 months, but when I saw his back for the fist time I cried because it was so straight and there was no rib hump. I can't wait to see him standing up to see how much he has grown. The surgeons have told us they got a better correction than they originally thought, but we do not know degrees yet.
    To Bev and Sara - I was so scared but it was worth it. A lap top is a great idea because a lot of the teens in here have brought theirs in.
    Sue - I am in room 12! Room is fine and nice and close to ADU.
    Cam should be in until 14th or 15th. Hope |ucy is enjoying her hols.
    Thanks for all your good wishes. Will post when I can.
    Tracy and Cam x

    Report message7

  • Message 158

    , in reply to message 157.

    Posted by christine (U10806837) on Thursday, 6th August 2009

    Hi Tracy and Cam
    What a brave lad to cope with all that in one go. So pleased to hear from you, been thinking of Cam constantly and wondering how everything went. Make sure you take care of yourself Tracy and rest whenever possible.
    Look forward to more posts when you can.
    Christine x

    Report message8

  • Message 159

    , in reply to message 157.

    Posted by suelucy94 (U13851571) on Thursday, 6th August 2009

    Hi Tracy
    Fantastic news! So pleased that all has gone well. It certainly sounds like you had a roller coaster ride at the beginning though but at least it was all done in the one op- amazing! The fact that Cameron is eating is great too- Lucy just had no appetite. I can understand what you mean about not believing the op has been done- it's the waiting that is the worst- or it was for us anyway.
    Like Christine said, try and make sure you rest when you can. I hope room 12 is being used sometimes! Well done Cameron on fantastic progress - you're a star!

    Hi to Christine and Emma- we hope you are enjoying the holidays too. Lucy caught sight of herself in the mirror yesterday and did a double take- she said she didn't realise how straight her back is! It was all worth it definitely.......

    Hi to Bev and Sara
    Like Tracy and Christine have said- this is probably one of the scariest things you both will have gone through but l really hope that you will both have gained some comfort from all the posts on this site, as l know we did. This site was a "godsend" for me- l was totally shell shocked and in disbelief at having missed Lucy's curve and to log on to a site where other mums had been through the same and felt the same was so comforting and l didn't feel like we were dealing with it on our own anymore.I think a lap top is a great idea too. I hope Sara gets to do some of her fun things before the op and then keep some back for her to look forward to. If she is anything like Lucy, then a promised shopping trip to New Look, Primark etc etc for some new clothes to show off her new back should help!

    Please keep us updated.

    Best wishes to everyone

    Sue x

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  • Message 160

    , in reply to message 157.

    Posted by gentleladygreeny (U13938496) on Friday, 7th August 2009

    Hi Tracy and Cam
    Brilliant news to hear Cam is doing so well. We have been thinking about you all week. It is so good to be in touch with yourself and other parents through this message board. I can totally understand why you cried when you saw Cams back. It must have been so emotional with all he has been through and all your family. Sara is not talking too much about the operation. It is her way of dealing with it and i have to respect that. She read your message and is so pleased that Cam is doing well. We go in on the 17th for the pre-op tests and then op on the 19th. Will update soon.
    We hope Cam keeps doing well and he has been so brave.
    Take care
    Bev and Sara x

    Report message10

  • Message 161

    , in reply to message 159.

    Posted by gentleladygreeny (U13938496) on Friday, 7th August 2009

    Hi Sue,
    I really have gained comfort from this site, it also has been a godsend for me. Sara now has her laptop and is quite bright. She won't talk about the op much, but that is her way of dealing with it. We go in on the 17th for pr-optests and then op on 19th.
    She will definetly look forward to a trip to the shops as she does like her fashion.
    Hope Lucy is enjoying the school holidays.
    Will update soon
    Bev and Sara x

    Report message11

  • Message 162

    , in reply to message 161.

    Posted by madmum2816 (U13850009) on Friday, 7th August 2009

    Cam is continuing to do well. Eating and drinking loads. Chest drain to come out tomorrow and morphine pca. He will then be able to get up. Have managed to get back to room and get some sleep but Cam still needs a lot of care as he does not like to be left alone for long.
    The staff are superb - gets his meds on time and is turned regularly. I just want to see him stand for the first time! I was absolutely terrified on the day of the op but everyone was soo calm and reassuring - they see these ops done all the time.
    To Bev and Sara - Cam never talked about the op much. It was his way of dealing with it. I kept him busy with friends and things to do and focused on things after the op.. The advice from everyone on these messages totally helped us get through this, and it will give you support too.
    Take care
    |Tracy and Cam x

    Report message12

  • Message 163

    , in reply to message 161.

    Posted by suelucy94 (U13851571) on Friday, 7th August 2009

    Hi Bev
    Lucy didn't talk about the op much either- it must be a teenage thing! I' m sure it was her way of dealing with it too.
    Do you know if it's a one or two stage operation? Cameron had the anterior and posterior op all in one whereas Lucy had two ops, 5 days apart?

    Take care
    Sue x

    Report message13

  • Message 164

    , in reply to message 162.

    Posted by suelucy94 (U13851571) on Friday, 7th August 2009

    Tracy

    We can't believe Cam is eating loads-that's fantastic! It's great that he's doing so well- we're so pleased. The staff are superb definitely. When Cam gets up for the first time you will be over the moon with relief and happiness- l took a photo on my phone for Lucy's first few steps on the ward- it was so amazing!

    Well done Cameron- keep going!

    Sue x

    Report message14

  • Message 165

    , in reply to message 164.

    Posted by christine (U10806837) on Friday, 7th August 2009

    Hi Tracy
    Sue is right, it is absolutely fantastic Cameron is eating well, I'm sure it will help in his recovery. He is doing great. I can still remember when Emma stood for the first time, it is so emotional. Great idea to take photos, although Emma standing will be forever imprinted in my mind.
    Pass on our best wishes to Cameron please, as usual we can't wait for your updates.
    Christine x

    Report message15

  • Message 166

    , in reply to message 165.

    Posted by madmum2816 (U13850009) on Saturday, 8th August 2009

    Cam brighter in himself today. Chest drain still in as drained more than they wanted and morphine drip still in. Pulse and temperature have come down as they were up a bit for a few days. He is a bit anaemic now but not enough to need another transfusion.
    He is looking forward to his bread and butter pudding tonight!! Bev - a good idea is to get things like fruity jellies and drinks you can put in the ward fridge as we have found these invaluable. Cam was incredibly thirsty the first few days and wanted cold fruity things. Bring some sticky labels and a pen so you know which stuff is yours. Also some mugs, tea, coffee and milk as their is a parent kitchen. I buy microwave meals and salads, fruit and bottles of water. The hospital canteen is pricey, but good for breakfast - toast etc. Also get books and mags. We've also got dvds to play on Cam's laptop. Cam sleeps a lot but like to watch a film or tv at times.
    Time actually goes quite quickly as there is usually something going on. I have been feeding and washing Cam and giving him his oral meds. Cannot believe we have been here nearly a week already!!
    I took a 4 plug extension for the parent accommodation so I can charge mobile phones and ipods etc, and a lamp for beside the bed.
    Hopefully might see Cam stand tomorrow!!!!
    Tracy and Cam x

    Report message16

  • Message 167

    , in reply to message 166.

    Posted by christine (U10806837) on Sunday, 9th August 2009

    Hi Tracy
    Fingers crossed you see Cam stand today, prepare yourself for tears. lol. Wonder how much he has grown, Emma grew 2 1/2 inches.
    Christine x

    Report message17

  • Message 168

    , in reply to message 163.

    Posted by gentleladygreeny (U13938496) on Sunday, 9th August 2009

    Hi Sue,
    Sara is having one stage op. She is talking a little bit more about it now and really looking forward to it being over.
    I don't know what i would do without all of this correspondence.
    Take care
    Bev x

    Report message18

  • Message 169

    , in reply to message 166.

    Posted by gentleladygreeny (U13938496) on Sunday, 9th August 2009

    Tracy & Cam
    So glad to hear that Cam is brighter. Did he enjoy his bread and butter pudding? How are you? A friend asked me today what i was taking with me to keep me busy. But to be honest i hav'nt thought about myself. I am having trouble sleeping at the moment, which is not like me.
    Thanks for info on what kind of things to take. It is a great help.
    I really hope you see Cam stand tommorow.
    Take care and we look forward to your updates.
    Bev & Sara x

    Report message19

  • Message 170

    , in reply to message 169.

    Posted by madmum2816 (U13850009) on Monday, 10th August 2009

    Today was incredible!!
    Chest drain came out. Cam had clear chest xray. Then the physio came to the ward and fitted a temporary corset and Cam sat and then stood up. Ian, Finlay and I were dumbstruck. I cried as Cam has grown 7cm and is as tall as me!!! He can look me staight in the eye............
    He then went for a short walk and sat in a chair for 20 mins. Later this evening he went for a longer walk and ate his dinner sitting in his chair. The staff are amazed at his determination and think he may come come home on Thursday!! Catheter came out too so no more attachments.
    Tomorrow he goes for his brace fitting and another full spinal xray. He should have his brace by the afternoon.
    we are so proud of him.
    New teenagers and their parents were in overnight for their ops this morning. You can see what they are going through. We were there a week ago and Cam has made so much progress.
    Threre areso many children and teens on the ward having this op it is like the norm!! Bev and Sara it is a traumatic and scary experience but the result is amazing. I too had trouble sleeping but my gp was very good and prescribed me some diazepam for the initial few days which helped a lot.The staff are also brilliant at keeping you infomed and reassuring you. I am so tired now I sleep without any problem!
    I will post an update when I can. Sue - thanks for the card - we were very touched. Have tried phoning and sent a text.
    Take Care
    Tracy and Cam x

    Report message20

  • Message 171

    , in reply to message 168.

    Posted by suelucy94 (U13851571) on Tuesday, 11th August 2009

    Hi Bev

    Having read all the recent updates from Tracy, l hope you and Sara can take comfort in them. You are one week away from the operation and it will be so worth it . I was in despair beforehand worrying about it but afterwards we felt relieved and grateful as everything had gone so well. The greatest fear for me was the unknown but l hope all these posts help to give you both an idea of what to expect.

    It will be over soon- the next few weeks will be difficult but you will get through it.

    Take care

    Sue x

    Report message21

  • Message 172

    , in reply to message 170.

    Posted by suelucy94 (U13851571) on Tuesday, 11th August 2009

    Hi Tracy

    7 cms taller is amazing and Cam is doing really well! Lucy did lots of walking on the ward once she had her soft corset but she found sitting up painful.
    You're nearly there! Keep going!

    Speak soon

    Sue x

    Report message22

  • Message 173

    , in reply to message 171.

    Posted by gentleladygreeny (U13938496) on Tuesday, 11th August 2009

    Can't believe it. We got a phone call today. op is cancelled until 19th october.
    Sara was shocked and had prepared herself for this.
    This is so frustrating. i had everything organised. I feel totally useless.

    Tracy & Cam
    Your post today was amazing. So good to hear all has gone well.
    Sue
    We have taken lots of comfort from all of the posts. I don't know what i would have done without them.
    Bev & Sara x

    Report message23

  • Message 174

    , in reply to message 173.

    Posted by christine (U10806837) on Tuesday, 11th August 2009

    Hi Bev and Sara
    Sorry to hear the op has been put back. Emma can understand fully what Sara is going through she went through a couple of setbacks before finally getting the op. Emma says for Sara to keep positive it will really help her in the end.
    Have they said if there is any chance of Sara getting her op earlier if there is a cancellation. Emma's first planned op date was cancelled when she had a temperature, then she got another date earlier than expected because someone else due to have the op had cold.
    I don't think anything I say will help you at the minute because I fully understand your feeling totally useless. You have your mind prepared and count down the days but then everything changes.
    I know it is very hard but try and stay positive.
    Is there something that Sara had originally planned and had to put off - this might cheer her up - wasn't her friend coming to visit.
    Wish I could say something to help?
    Christine x

    Report message24

  • Message 175

    , in reply to message 170.

    Posted by christine (U10806837) on Tuesday, 11th August 2009

    Hi Tracy and Cam
    7 cms is brilliant. You are doing great.
    Hope the brace fitting has gone OK today.
    Any word about Cam going home?
    How is Finlay doing? Megan was only 5 when Emma had her op and felt a little jealous of all the attention.
    Looking forward to more brilliant news.
    Christine, Emma and Megan x

    Report message25

  • Message 176

    , in reply to message 174.

    Posted by gentleladygreeny (U13938496) on Tuesday, 11th August 2009

    Hi Christine.
    Thanks for your comforting words. We will stay positive, it is just so frustrating. They did say there could be a cancellation but i stuck with the october date because i have to organise so much.
    Sara is now able to go to her friends party next weekend which she is very happy about and she will be able to see her friend who is coming to visit.
    Overall she is brighter than me although she did say that she had prepared herself for this (as much as was possible)
    Thanks again
    Bev & Sara x

    Report message26

  • Message 177

    , in reply to message 176.

    Posted by suelucy94 (U13851571) on Wednesday, 12th August 2009

    Hi Bev and Sara
    I am so sorry that the operation has been delayed and l can understand your frustration. I'm not sure what l can say to help but October sounds a long way but in terms of weeks it might not seem as bad? Sorry that probably doesn't help. As you say Sara can now go ahead and do the things she had planned to do in the holidays. I hope you are feeling more positive now - it would have been a shock to get the call but hopefully you are both getting used to the new date. Lucy's admission date was changed with just a few days notice and it completely threw us as we had everything in place. Lucy's brother was taking his A levels during this time and stress levels were high for everyone (with the results next week l can feel them getting high again!)

    If October is good for you with lots of things to organise, then l understand you waiting until then.

    Take care
    Sue x

    Tracy- I hope Cam has his brace today? You are nearly there now! x

    Report message27

  • Message 178

    , in reply to message 177.

    Posted by madmum2816 (U13850009) on Thursday, 13th August 2009

    Hi everyone
    Cam came home yesterday!! Got his brace and we were on our way. It was all so organised!! So good to be back and Cam loves his new bedroom. Was a bit tearful this morning as he has to wear his brace at night as well, and it was hot and uncomfortable, but I guess he will get used to it. He is doing well for the pain as goes quite long gaps between taking his meds. We will be going back to Stanmore in 6 weeeks for review. We have a copy of his xrays and MRI to keep which is amazing to see. His back is so straight and there is no rib hump.
    He is looking forward to seeing his friends now.
    Bev and Sara - I am so sorry your op has been delayed. It is obviously frustrating when you build yourself up to it and then plans change. Please stay positive - it will be worth it in the end. We waited for months to see our consultant but the time went quickly in the end. Sara will be back at school for a while so will be kept busy. You might even find that date comes forward in the end. Stay in touch and take care x
    Sue and Christine - thanks you for all your wonderful support. I will be in touch!!
    Tracy and Cam XX

    Report message28

  • Message 179

    , in reply to message 178.

    Posted by christine (U10806837) on Thursday, 20th August 2009

    Hi Tracy
    Thanks for the phone call, sorry haven't been in touch yet. Hope Cam is still progressing well. Will try to ring later in the week.
    Christine x

    Report message29

  • Message 180

    , in reply to message 1.

    Posted by happycheekycharlie08 (U14109181) on Thursday, 20th August 2009

    I think that is a very good idea to have a test done at 23 i have scoliosis and having it apparently since i was born and not finding out till i was 12 years old was a really bad time for me to have opperations as it affected my life in such awaybi wished i had known about it from and early age and it could of been corrected in stead messing about at senior age where my school work was affected greatly.
    I have a little boy now and having a hard pregnancy and being checked constanly, have found that luckaly my son doesnt have my problem.
    But i beleive that it should be found out for childern earlier as it will be easier for them to have it sorted out earlier and not affect there lives as much as it has mine.
    I will definatally be singing the petition and i will have every one in my family do the same.

    Report message30

  • Message 181

    , in reply to message 16.

    Posted by sophieria (U12489232) on Friday, 28th August 2009

    Hi Christine

    I have not been in touch for such a long time (first posted June 08) when Ria was diagnosed and you kndly responded back then. We would now value your help and experience with where we are at now. All this time has passed and Ria is stil being monitored, she was 14 in March. We are under the Consultant at St Georges in South London. I am a little concerned that Stanmore seems to be where most people are sent and where everyone talks about. We are moving along with our hospital appointments slowly, are under the NHS as do not have private cover. Ria was measured again 2 weeks ago and is now at 60 degree curvature and the consultation took a different turn which threw us. Ria is by the way still bouncing around, doing all her sport and is very fit and acrive. When asked by both consultant and ourselves, does she have any aches ror pains, she says she has none. He asks her how she feels about her back and she does not really say anything. I have asked her if anyone makes comments in school and she says 'No'. The rib hump now, as you can imagine from the size of the curve, is very apparant over her right shoulder blade. This summer we really noticed it on the beach and every time she bends down her back is now very distorted due to the hump. When she is sitting down she is very bentover and her posture now is dreadful and we are constantly saying to her to sit up (she hates that!).. Standing up however, you would not even know her spine was so curved. I am worried that it is only a matter of time before she will be more aware of it and comments may come her way. The consultant asks Ria what she thinks about her back and an operation but we think she is too young to answer that to be honest. He did tell her she would probably not do sport for a year, and of course she did not like to hear that, he then went on to give the statistics for post op ie cases where one could end up in a wheelchair or even not recover (albeit rare). We asked the Consultant, what if she did nothing and what medical/health implications were there later on for her (this really concerns me because one lady responded to my message before saying that it was all about having to have the operation and what would happen if she did not have it and that it was not all about the sport Ria wanted to do). Up to now we just thought that as the curve got worse it would have to be corrected because of al the problems it could bring her later on. He stated that there was no medical evidence to suggest she would not just carry on life as normal as any other person without scoliosis would. Right now we are completely in limbo with our mixed thoughts He has asked us to discuss all this with Ria and come back to him in 10 weeks to talk again but he will not be measuring at that apointment. He did say if Ria herself wanted this done then he is there to help her and it could be done, but is a major operation that should not be done because of an x-ray. But when we see the xray we cringe as it looks like that of a 90 year old women. In the last 6 months the curve increased by 10% and she is still growing. Recently Ria was invited to try outl for National Netball Coaching Team, but was turned down, she asked for the feedback and was quite clearly told that despite being very skilful, (plays centre. not defence or shooter and is average height) that they did prefer the taller girls. The scouts told her to trial again next year when she had grown a bit more. She was quite bitter about that and did say to us that she felt this was because her curve has taken some inches off the height she should be by now (she is no doubt right about that). We keep reading that it is better to have the operation when younger, right now we just do not know what to do.
    I have just been catching up on the messages on this site and honestly, it just seems all so positive when you talk about your operations and how things go afterwards for the children,

    Wishing you all well and thank you, sorry I have gone on a bit!

    Bernadette

    Report message31

  • Message 182

    , in reply to message 181.

    Posted by christine (U10806837) on Friday, 28th August 2009

    Bernadette
    Please don't apologise for going on, we all understand on this forum how worrying a time you are going through.
    My honest opinion would be for Ria to have the surgery now or in the near future, her curve is progressing rapidly and from my experience with Emma it can only get worse not better. Even if it stopped now and didn't get any worse Ria would still have a 60 degree curve and a rib hump to cope with. I can understand how Ria is feeling and she doesn't want to stop doing sports. The sports wouldn't stop forever and the scoliosis if left to continue to grow might hinder her in later life.

    Both Lucy and Cameron on this site have had recent operations at Stanmore and from what I can gather is an excellent hospital. Emma had hers at the Freeman in Newcastle and that too is excellent as it gave Emma a new future. She was suffering with aches and pains and also shortness of breath. Her curve increased from 58 and 48 degrees (S curve) to 80 and 70 degrees within 9 months. From what is written on the internet and other scoliosis sites I would imagine that the curve would not stop progressing until your body stops growing. Is there any chance that Ria could transfer her care over to Stanmore for them to give her a different opinion than that of the consultant at St Georges. Normally surgery would be considered if the curve reaches 50 degrees.

    I also understand your feelings about what others may say to Ria about her back. People can be cruel and can say not very nice things to anyone who appears different. At present, she probably comes across the same people every day who are used to her back and the curve and rib hump. If she were to come across others who make comments then it will be harder for her to cope with.

    You need to try and find out exactly how Ria feels about her back. Emma was only 10 when diagnosed and was very upset and also very angry. She was also very embarrassed about it which made her stoop even further. You say in your message that Ria feels bitter about not making the netball team, if she has difficulty in other areas of her life that bitterness could increase. As I have said before on this site, and one thing which I regret not doing, is getting Emma to talk to someone about her feelings and what she would have to go through. By the time I thought about doing it the waiting list was too long and she would not be seen before her op. I think it would have done her the world of good to see a child psychologist beforehand to talk openly about her feelings and worries. She saw someone after the op but by then had come through the worst.

    I think the consultant has been a bit hasty in giving the details of what might happen if Ria has the op. Emma's consultant, as all other consultants who are about to do any operation, have to give you the details of what might happen, even the rare things that may happen. Emma's consultant told her the night before the operation but was very quick to reassure Emma that he does at least one of these operations a week and has never had any complications arise. No-one has ended up paralysed. He says there is more chance of you getting paralysed from being knocked down on the road. Obviously they have to do their jobs in giving you the statistics of what might happen but there is a way to do it and a way not to do it. Is Ria's consultant a scoliosis specialist? If not, you need a referral to one.

    From the information I gathered I would have said that a curve this size should be corrected with surgery and if not could lead to difficulties later in life. I am a member of a yahoo group called Scoliosisnutty and some members on there have not had surgery and their lives have been more challenging.

    I can't understand him saying that an operation should not be done just because of an x-ray. The x-ray is there as proof of the size of the curve. What other evidence do you need that Ria has scoliosis and her curve is progressing.

    If Ria had the operation she would certainly grow quite a bit. Emma grew by about 2 1/2 inches in the space of the 6 hour operation. Yes the operation is a major one but one that changed Emma's life for the better. She is a totally different girl now than she was, more confident and walks so tall, no embarrassment there now about her back. She still has a very slight rib hump but the consultant, Mr Fender, managed to get her curves down from 80 and 70 to 20 and 18 degrees which was 50% better than he thought he would. The younger you are the easier the operation must be as your spine is more flexible.

    Emma says to Ria to get it done now and then in a year's time you can try out again for netball and she will be taller and just as skilful as now and Emma says that if she doesn't get the op then she will probably end up not playing netball at all. Emma ended up short of breath and in pain and the operation fixed that and she doesn't want Ria to get to that stage. She wishes Ria good luck.

    The period of time before the operation, during the operation and the recovery afterwards can be stressful but what you have to remember is the fantastic outcome. A straight spine and your daughter walking tall. Emma wasn't given much choice about the operation, it was a case of her consultant saying she needs it and she needs it now. I put my faith in what he said and followed his advice. If you are not sure about what the consultant is saying then you need to ask for a second opinion. This is a major decision for Ria and yourself to make.

    I hope I have clarified some things for you and not confused you even more. Please keep in touch. Most of all please try and find out what Ria actually feels about her spine and the operation. It is easy for children to hide their true feelings and for this to eat away at them.

    Keep me up to date Bernadette with all your thoughts. I will be thinking of Ria and all your family.

    Christine

    Report message32

  • Message 183

    , in reply to message 182.

    Posted by madmum2816 (U13850009) on Sunday, 30th August 2009

    Hello Bernadette
    My name is Tracy and my 15 year old son, Cameron, had anterior release and posterior spinal fusion at Stanmore on August 4th. He was diagnosed with a 35 degree curve in October last year which had progtressed to a 74 degree curve by the time he had surgery. He also had rib costoplasty surgery at the same time which has taken away his rib hump completely. His curve is now 16 degrees and he has a straight back, and grown almost 4 inchers as a result.
    Cameron is recovering amazingly well apart from a minor blip with a wound infection whuch means we have come back to Stanmore for treatment, but he is recovering, and has no regrets about the surgery. We were terrified about the prospect of a major operation, but felt it was Cameron's decision whether or not to have it. Ria is not too young to decide - all the doctors we have seen have said the decion should rest with the young person having the operation. There are many teenagers having scoliosis on the ward. They come in, have surgery, and go home a week or two later taller and straighter. It is amazing to see.
    It is not an easy thing to get through. We were given the risks and statistics, but these surgeons do this operation 2-300 times a year and have very few complications - usually these affect children with neuromuscular conditions already.
    Cameron and I feel you need to speak to a different doctor and try to get a referrral to Stanmore. I do not think your current doctor is giving you all the right infotrmation for you to make a decision.
    Hope this helps a bit. Keep in touch.
    Tracy and Cameron x

    Report message33

  • Message 184

    , in reply to message 183.

    Posted by christine (U10806837) on Sunday, 30th August 2009

    Hi Tracy
    Agree totally with you on this, second opinion needed.
    So sorry I have not returned your call, phone a bit old and not much good, didn't get your message until the Wednesday, unfortunately had a bit of a traumatic week, our young cat suddenly died and have been a bit tied up.
    So glad to hear Cameron is doing well. 16 degrees is absolutely fantastic from 74. 4 inches wow!
    Off to the caravan for a few days, please text me with your number as my phone didn't record it or contact me by e-mail christineyeo@fsmail.net.
    Christine x

    Report message34

  • Message 185

    , in reply to message 181.

    Posted by gentleladygreeny (U13938496) on Sunday, 30th August 2009

    Hi Bernadette
    My name is Bev and my 14 year old daughter is Sara.
    I have had so much comfort and positive feedback from this sight, i hope you do aswell as it can be such a worrying time.
    We found out Sara has scoliosis back in march of this year. She had x-rays, mri scan and appointments to see our consultant at norfolk and norwich hospital. Her last x-ray showed a curve of 60 degrees at the top and 30 at the bottom. That was 3 months ago and i know it is alot worse than that now. Sara said that she wanted the surgery as she does get a little pain after been quite active through out the day. She was very tearful and angry and did'nt really talk about it much but she is alot more positive now thanks to this site. That has made alot of difference in the way she feels about it.
    We were told about the risks on our last appointment which they have to do but it is such a small percentage.
    We did have a date for the operation but it was cancelled a week before so now we have the date for 19th october.
    My eldest son goes to uni in a few weeks so my focus is on him at the moment, and then when he is settled my focus will be on Sara. I did ring the hospital last week because Sara's back has changed. They said that i can take her there if i want her checked but she isn't in any more pain and it is probably the deteriation. Sara said she is ok and does not want to go back until the operation.
    When we first found out that Sara will probably have to have the correction surgery we asked Sara what her thoughts were and although she found it hard to talk about she did say that she would rather have the surgery than have problems later on in life. And of course be like all the other girls at school and have a straight back.
    I was so scared at first when the operation was spoken about but to be really honest i have heard nothing but positive feedback from everyone i have been in touch with, and i feel so much more positive now.
    I do hope this feedback helps you and Ria and all your family.
    Take care
    Bev & Sara

    Report message35

  • Message 186

    , in reply to message 183.

    Posted by gentleladygreeny (U13938496) on Sunday, 30th August 2009

    Tracy & Cam
    So glad Cam is doing well. Sorry to hear about minor blip, hope everything goes well.
    Can't believe he is 4 inches taller, that is amazing.
    Take care
    Bev & Sara

    Report message36

  • Message 187

    , in reply to message 181.

    Posted by suelucy94 (U13851571) on Tuesday, 1st September 2009

    Hello Bernadette
    I'm Lucy's mum and l have just read your message and I really sympathise with you both. Lucy wasn't in any pain either and her curve was 60 degrees too. Like Christine , l would have thought that this would need correcting - our surgeon looked at Lucy's back and said surgery was the only answer as did the consultant orthopedic doctor on our first referral. I also believe that without correction, it could have led to difficulties in the future for Lucy. I am also puzzled by the doctor saying not to base an operation on an x-ray- how else do they make a decision? I am not medically trained and l am not telling you what to do but on what l have seen and heard and been through, then l would have thought surgery is the answer.

    I agree with everything that Tracy and Christine have said to you both already so won't repeat them! It is surely not natural to have such a curved spine and surgery when the patient is young and "bounces back" is preferable to later in life.

    I think you need to return to the consultant or ask for a second opinion? I think a curve of 60 degrees should get you seen sooner rather than later-hopefully. It has increased in the last six months and may increase still. I am also puzzled at why he has told you he will not be measuring Ria at your next appointment- why not!?

    You say you cringe at the xrays- l understand that- l felt the same. Ria. Unfortunately it sounds like it is affecting her netball already.

    I hope all the messages have helped.

    Sue x

    Report message37

  • Message 188

    , in reply to message 187.

    Posted by sophieria (U12489232) on Friday, 4th September 2009

    Hi Christine,Bev,Tracey & Sue

    Thank you all so very much for replying.

    Our minds have been so full, with all you have said and I have had so much to do, that this is my first opportunity to post,.
    I really want to say how very helpful you all are out there, so very helpful..

    I rang SAUK and spoke to a lovely lady who was extremely helpful. We have since seen our GP (whom really knows Ria well) and along with a letter we have written to the Consultant, he has written too.

    After much thought/research/calls and deep discussions with Ria, we realise that she is indeed very unhappy with her back and just wants 'to be like all the other girls at school and not appear different.' She is now really coming out of herself with very open questions (little did we know she had been doing her own research, and not always the best sites visited may I add!). She asks us 'will it get worse'? What if nothing is done? She is very concerned that it will get worse and does not want her back to stay that way. She has recently given up her swimming (still doing the other sports) at the time she had said the training was taking up too much time, which it was, however, we realise her feelings about her back played a huge part in her making that decision. We have in avance of the next appointment in November written to the Consultant requesting that he help Ria by carrying out the operation, because that is what she wants. We have the full supoort of our lovely GP in the event of wanting to transfer elsewhere asap. Our Consultant will now know how Ria is truly feeling and we have stressed we wish to move forward with this sooner than later. Ria was first diagnosed by the GP June 2008 and the rib hump was barely visiable but her curve was 42 degress. This feels like so long ago now. You do all appear to have moved fairly quickly with your children's operations? We are left wondering what our consultants workload is like?. I believe him and his team carry out one scoliosis op per week. Our first visit to St Georges we had an appointment with the consultant but only got to see his registrar. The same happened on the next appointment and then we only got to meet him for the first time, a few weeks ago at the third appointment.

    Ria does not appear afraid at all of having the operation, mind you, she is the type to just get on with things, no fuss!. She asked to read the letter to the Consultant, so of course we let her. We too are currently seeing off her sister to Uni in the next couple of weeks, so she is busy helping her get ready. We know she will miss her terribly.

    She was delighted to read Emma's comments encouraging her to do the netball trial again, and through SAUK is joing the facebook site to talk to others.

    So regarding the no xray/no measurement at our next appointment in November, we are not sure now following our letter and also that of our GP, what will happen next? Ria had the MRI scan 7 months ago and the most important thing is that in the last 6 months the curve increased by 10% and she is still growing. Her legs/feet and fingers are long and her back does not now look in keeping with the rest of her body.

    Oh if anyone out there has experience of St Georges in London, please can they advise anything they can?

    Thank you all again. I feel we are moving now, so I will keep you posted.

    Best wishes and good health/recovery to the children.

    Bernadette & Ria

    Report message38

  • Message 189

    , in reply to message 185.

    Posted by sophieria (U12489232) on Sunday, 6th September 2009

    Hi Bev

    All the best with your son's preparation for Uni, we have hit Ikea big time, I am sure half of it will not be used!

    The last fews days Ria too has been complaining about her back aching, particularly after a long session of netball or other, she has never had this before. I am giving her fairly gentle massage which she says reallly helps. She is also now coming along to yoga with me, which she enjoys and says feels really good. The years of swimming training/galas etc have just gone, which is disappointing, as we know it is is so good for her back, but we will help her get back in the pool in the future, when we see how things go for her.

    How awful to have your date changed, I cannot imagine how that felt for you all? Is Sara having the operation at Stanmore too?

    Just to let you know, yesterday we had great call from a friend's family member who had the operation 20 years ago when she was 14 (we had met her before a few times but of course had no idea then). She was so positive, has just had her first child, has had no problems since the operation, and so far had a perfectly normal life afterwards. Her cousin who chose not to have the operation and is a similar age now has ongoing aches and pains.

    Thank you again for the positive feedback, it is so good to get.

    Please keep in touch.

    Take good care.

    Bernadette & Ria





    Report message39

  • Message 190

    , in reply to message 189.

    Posted by suelucy94 (U13851571) on Sunday, 6th September 2009

    Hi Bernadette
    Do you know if your friend's relation have any problems in pregnancy and childbirth due to her having had the operation?

    I am glad that you have all come to a decision and written to the consultant. i am sure it will all be for the best.

    Our son is also off to uni in a few weeks time so we are busy buying all that he needs as well!

    Let us know how you get on

    Sue x

    Report message40

  • Message 191

    , in reply to message 183.

    Posted by suelucy94 (U13851571) on Sunday, 6th September 2009

    Hi Tracy

    How is Cameron? I hope he is improving everyday.

    Take care

    Sue
    x

    Report message41

  • Message 192

    , in reply to message 191.

    Posted by madmum2816 (U13850009) on Sunday, 6th September 2009

    Hi Sue and everyone,
    Sorry not been in touch recently. Life has been a bit of a roller coaster!! Cam came home on Tuesday after 2 weeks back at Stanmore for treatment for his wound infection. He had to go back to see the doctors on Friday because his temperature kept going up although he was well. They are not bothered about that as the wound is now healing nicely.
    Unfortunately he has developed the most horrendous rash over most of his body - red, itchy and hot. The doctors do not seem very concerned about it (although it has got worse). We are trying eurax lotion, piriton, aloe vera gel, and magicool. Also non perfumed washing stuff. He is on flucloxicillin four times a day and fusidic acid 3 times a day for the next 4 weeks! Poor boy also on anti sickness medication and ant-acid medication. The antibiotics look like the main cause of the rash. We are back at Stanmore to see Mr Molloy on Tuesday (on the ward thankfully). They may have to change Cam's medication as he can't tolerate this for much longer.
    Will update when we get back from Stanmore (again). Hope all is well back at school, and Lucy is enjoying it.
    Christine - I will be in touch!!
    Tracy and Cam xx
    Cam is feeling very down because of all this naturally. He is desperate to get back to school. He is managing to sit for longer and longer periods, and hardly needs any pain relief

    Report message42

  • Message 193

    , in reply to message 192.

    Posted by christine (U10806837) on Sunday, 6th September 2009

    Hi Tracy
    Sorry to hear about all this happening to Cam, didn't realise when you said he needed treatment for a wound infection that he had to go back to Stanmore, 2 weeks wow - understandably he must be sick of his life now. Hope Tuesday goes OK and they change Cam's antibiotics to get rid of this rash. Don't worry about getting in touch - there is no rush, you have a lot on your plate at the minute.
    Take care
    Christine x

    Report message43

  • Message 194

    , in reply to message 188.

    Posted by christine (U10806837) on Sunday, 6th September 2009

    Hi Bernadette
    I feel great relief that Ria has come to this decision. I'm glad that we have all helped you and will continue to do so all the way through Ria's scoliosis journey.
    Take care
    Christine x

    Report message44

  • Message 195

    , in reply to message 190.

    Posted by sophieria (U12489232) on Monday, 7th September 2009

    Hi Sue

    She did not appear to have any problems, once in labour only thing she could not have, was an epidural.

    All the best.

    Bernadette

    Report message45

  • Message 196

    , in reply to message 195.

    Posted by madmum2816 (U13850009) on Monday, 7th September 2009

    Hi Bernadette and Ria
    Have not had much time to post recently. Glad you are fuinding some useful information from these posts. It helped me a lot before Cameron went in for his operation. I am a midwife and I know of ladies who have not problems with pregnancy and birth with scoliosis. A colleague of my husbands had a double curve fixed with instrumentation 20 years ago and has two babies naturally with no problems.
    Glad Ria is opening up now and telling you how she feels. Cameron never talked much at first, but gradually opened up to us and it was painful at times.
    Glad to say Cameron is recovering well despite his setbacks (which are rare!!). His rash looks better today and we are back at Stanmore tomorrow.
    Tracy x

    Report message46

  • Message 197

    , in reply to message 196.

    Posted by madmum2816 (U13850009) on Wednesday, 9th September 2009

    Hi everyone
    Cameron was seen at Stanmore and they are happy with his progress. We were there for 7 hours but finally got his rash sorted. The paediatricians and microbiologist agreed that it looks as if Cameron is allergic to penicillin and have changed his antibiotic. The rash has started to fade already so he is a lot happier!
    He has to have more blood taken with our Gp on Friday and we are to be seen at Stanmore again next week. The wounds are finally healing over.
    Cameron is going to school today for his group Year 11 photo and is really looking forward to it. I, at last, can find some time to get to the hairdresser to cover up my (increasingly grey!) locks.
    We finally see an end in sight to Cameron's wound infection!!
    Tracy and Cam xx

    Report message47

  • Message 198

    , in reply to message 197.

    Posted by christine (U10806837) on Wednesday, 9th September 2009

    Hi Tracy
    Great news. Cameron will go from strength to strength now. Enjoy your trip to the hairdressers.
    Christine x

    Report message48

  • Message 199

    , in reply to message 197.

    Posted by suelucy94 (U13851571) on Wednesday, 9th September 2009

    Hi Tracy
    I'm pleased that things are now on the up for Cameron(and you!) You were there a long time yesterday but got everything sorted. I'm pleased the wound is healing well too.
    Enjoy the hairdressers!

    Take care

    Sue
    x

    Report message49

  • Message 200

    , in reply to message 197.

    Posted by sophieria (U12489232) on Thursday, 10th September 2009

    Hi Tracy

    It is really great to hear Cameron was heading in to school yesterday to see his friends. So glad his rash is going.

    Take good care and our best wishes to you.

    Bernadette & Ria

    Report message50

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