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Scoliosis testing in schools in UK

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Messages: 301 - 339 of 339
  • Message 301

    , in reply to message 299.

    Posted by sophieria (U12489232) on Friday, 8th October 2010

    Hi Rachael & Everyone

    Time has just flown and just getting back on now and wanted to see if I can help you Rachael in any way.

    My daughter Ria (15) had her surgery 5th Jan this year at Great Ormond Street Hospital and was out on 9th Jan. She returned to school 1st February and we have never looked back. She had all those tests done 3 weeks before on her pre op day to GOSH, where she was a day patient on the actual ward and met all the team in advance. Like Lois she was always very positive and had no concerns whatsoever. She was very fit at the time when presenting for the operation.

    You will see from my previous postings, we too had a very frustrating start, going private initially, then NHS. We were not happy at all with her management under the hospital that we initially were sent to, so with the help of our wonderful GP we asked to be seen at GOSH and everything then just took off very very rapidly. SAUK were so helpful and kind with all their advice, I will never forget that.

    Ria's recovery was fantastic, hence her stay in hospital was not long. Mr Tom Ember, her Consultant and his spinal team were just amazing,as were the entire spinal team on the ward. Ria now has no pain, is back swimming, cycling, playing netball and lacrosse. She had 'right thoracic scoliosis' which was at 70 degrees when Mr Ember met her in Nov 2009. She has had posterior spinal fusion T2/L1, it has had no effect on her mobility, her neck not being effected at all, in fact apart from touching her toes (without bending her knees) she does everything the same as before. Her scar is hardly noticable (very thin actually, strips were used only) and has seriously faded, we have used bio oil on it. Neck to bum sounds very long it certainly is not like that, more like bottom of neck to top of waist, but Ria's was thoracic only.

    Ria is very very happy as life has returned to normal for her, post her op and is so glad she had it done. Naturally her fitness, because she was not doing team sports again until recently, had dropped but that is getting better by the day. She was back in the swimming pool around four months after the operation. She is almost three inches taller and she is always catching us looking at her back now, which is so beautiful and straight.

    I could rattle on for ever but I do hope our positive experience helps you.

    All the best to everyone.

    Bernadette & Ria

    Report message1

  • Message 302

    , in reply to message 299.

    Posted by christine (U10806837) on Saturday, 16th October 2010

    Hi Rachael

    Good to hear from you again.

    Emma had lung capacity tests, heart tests, bone scans, x-rays etc before her op, think it's standard procedure.

    Good idea for Lois to meet up with other girls who have gone through the different ops, great that she can choose herself where her scar will be.

    No what you mean about being pulled along. Everything goes so fast.

    Lois has the right attitude to this and I am sure it will aid her recovery.

    Please don't take any notice of what the person in America said about it being the worst thing to do. Emma is 3 1/2 years post op and has never regretted it. The choice is taken out of your hands when the curve is progressing as they do. You have to go along with what the surgeon says, they are the experts and they know what is best. Can't understand how alternative therapies could help a progressing curve, it can't stop it curving more and it can't straighten the spine once curved.

    Keep positive, hope the surgery goes ahead as quickly as possible so Lois can get on with the rest of her life, straight and pain free.

    Christine

    Report message2

  • Message 303

    , in reply to message 298.

    Posted by christine (U10806837) on Saturday, 16th October 2010

    Hi Mai

    We've been to SAUK's meeting today at the Freeman Hospital in Newcastle. Very interesting and covered all different types of scoliosis - congenital, idiopathic - early onset and late onset, neuromuscular and adult. One of the people there asked the question about the magnetic rods. Mr Fender (spinal surgeon at the Freeman) said that these rods were only being tested in a few centres around the world and that problems are still being experienced with them. Not sure exactly what the problems are - something to do with the motors and batteries I think he said. Just thought it was worth mentioning just in case you get approval for these rods to be fitted.

    Please keep us updated.

    Christine

    Report message3

  • Message 304

    , in reply to message 303.

    Posted by daniasmom (U14517840) on Tuesday, 19th October 2010

    Dear Christine,

    Really appreciate your note about magnetic rods, it's important to know what is delaying them from getting approved.

    I spoke to the director of approval committee, she asked me to write a letter explaining Dania's case and requesting approval to do the operation...but at the same time she did not promise anything! I understand where she comes from, but now that you've mentioned the problem I have better understanding to what's going on.
    Dania has been in daily pain in her back, chest, and waist. Therefore, my husband and I decided to go for traditional rods, only because this approval process could take forever, and I just want to put an end to Dania's misery.

    Christine, thank you again for letting me know about magnetic rods problem.

    Take care,
    Mai

    Report message4

  • Message 305

    , in reply to message 304.

    Posted by christine (U10806837) on Tuesday, 19th October 2010

    Hello Mai

    Sorry to hear Dania has been in pain, it's hard to watch your child go through this. Understand completely that now you just want the operation done as quickly as possible. Have you any idea of dates yet? Hope the wait won't be too long.

    Take care and best wishes to Dania and all your family

    Christine

    Report message5

  • Message 306

    , in reply to message 305.

    Posted by daniasmom (U14517840) on Wednesday, 27th October 2010

    Hello Christine,

    Just a little update, ....called Mr. Noordeen Secretary this week to ask whether Dania is back on the waiting list! Still no answer, we have to wait till next week when Mr. Noordeen comes back as has the final say.

    Hope the kids are enjoying their half term holiday smiley - smiley

    Take care,
    Mai

    Report message6

  • Message 307

    , in reply to message 1.

    Posted by BookwormMum (U14689231) on Tuesday, 16th November 2010

    Hi there
    I've been lurking on this thread for months, ever since I learnt that my 13-year-old daughter has scoliosis and will have to have surgery. It's been a great help to me to hear both the fears and then the resolution of so many children's situation - thank you all so much for sharing.
    Today, I'm panicking. My daughter has an existing condition which means that her she uses a power wheelchair, and has very little hand function. Her curvature has gotten much worse since April, when we were told the end of October would be a good time to operate. She now has a curve of between 92 and 105 degrees, depending on how her surgeon measure it. We were given tomorrow as a surgery date, but due to a radiographers partial strike, and some other reasons we haven't managed to find out about, we've just been told that we don't have a date this year at all! Presumably, although not confirmed, we won't have a date until Feb - we're in New Zealand, and it's summer during January, and many 'scheduled' things don't get going again until Feb.
    We have a meeting on Friday with the surgeon, to discuss the situation, but apparently he has had all his operation dates for the rest of the year cancelled - except for 20 Dec, which he won't use to operate because he's flying out 3 days later and wouldn't be able to be around post op, in case of complications.
    I'm wondering just how curvey a spine can get, and what that will do to my daughter's quality of life. We've noticed her breathing is more shallow, she doesn't cough properly, and her appetite is small - no suprise as the x-rays show her spine twisted over so much her stomach must be under a lot of pressure. She also gets tired sitting in her wheelchair and wants to lie on the couch when she gets home from school. Moving her and handling her gets more and more difficult - yet she's not 'in pain'. I just don't know what to do and am freaking out thinking how much worse it might get. If it was to stay stable, we could manage, I think, over the summer for a few more months, but I don't think it will! Has anyone had any experience of a curve this large - I'd love to hear it!
    And here I was thinking the post-op period would be the most stressful time.......
    Thanks - for writing yourself, and for reading.


    Rachael

    Report message7

  • Message 308

    , in reply to message 307.

    Posted by madmum2816 (U13850009) on Tuesday, 16th November 2010

    Hi Rachael,
    Sorry to hear your daughter is having so many problems. The breathing, tiredness and not eating all sound very typical of someone with a large curve. I am surprised they are not treating her as very high priority - New Zealand has a good reputation for treating scoliosis. In fact one of the surgeons in my son's care was from NZ, and has now returned there (Mr Antony Field).
    It is very stressful waiting for the surgery - my son's curve went from 35 degrees to 75 degrees in 8 months and was operated on within 6 weeks of his consultant appointment, last year when he was 15 years.
    If your daughter's condition is worsening rapidly then I have no hesitation in getting a firm date from your doctor - or being referred to a surgeon who can operate quickly. Be forceful - things can change and happen quickjly if necessary. Her quality of life will be so much improved by the surgery.
    Good luck with the appointment on Friday and let us know what happened.
    Tracy

    Report message8

  • Message 309

    , in reply to message 308.

    Posted by madmum2816 (U13850009) on Monday, 22nd November 2010

    Hi all
    Cameron and I have just returned from Stanmore RNOH following Cam's 3rd check up 15 months after surgery. His spine has fully fused, all the rods and screws are stable and he has been given the all clear to do any activity he wants!!!!
    We have to go back in a year but he is looking forward to cycling, climbing and all the other things he has missed.
    Hope everyone else is well.
    Tracyx

    Report message9

  • Message 310

    , in reply to message 308.

    Posted by BookwormMum (U14689231) on Thursday, 25th November 2010

    Wow, things can move quickly - went to see surgeon last Friday, all very depressing - he's working but has NO operating theatres schedule. They don't do scheduled ops over Xmas break, so Jan 17th was first possible date. I spent the weekend trying to pull myself together and find the positive - had just about succeeded by Monday. Monday afternoon we get a call - another surgeon's patient has cancelled, our surgeon has been offered the space - do we want the op on 1st Dec? Do we what?!? So it's all on for next week - I've been in shock the last couple of days! Amy was shocked too, but seems to have recovered faster than me. Really happy to be getting on with it.
    Just wanted to say a huge thanks to anyone who's written their story here, it's been enormously useful for me to read all these and get some idea of challenges and joys.

    Report message10

  • Message 311

    , in reply to message 310.

    Posted by madmum2816 (U13850009) on Thursday, 25th November 2010

    Hi Rachael
    Its amazing how things can change suddenly! The best bit is it gives you less time to dwell on things. Hope all goes well and Amy is back home soon and recovers well.
    Its tough watching your child go through it but her quality of life will improve so much.
    Keep posting and ask any questions!
    Tracyx

    Report message11

  • Message 312

    , in reply to message 309.

    Posted by suelucy94 (U13851571) on Thursday, 25th November 2010

    Hi everyone

    Tracey- it's great news to hear all is well after Cam's check up and that he can now resume all his hobbies!
    Lucy is doing well- she had a nagging pain in her back on and off throughout October- mostly whilst sitting in classes at school but that has gone now-thankfully. I think this is normal- l would appreciate any one's thoughts though.
    Hi to everyone on this site- I'm so pleased that through sharing our thoughts, we are all able to comfort each other and gain more information. It's always a relief to share our worries with others in the same situation.
    Take care everyone
    Sue
    x



    Report message12

  • Message 313

    , in reply to message 312.

    Posted by madmum2816 (U13850009) on Thursday, 25th November 2010

    Hi Sue - nice to hear from you too! Glad Lucy is doing well.
    Cam also gets some pain in his lower back if he sits or stands for any length of time. He also gets neck ache on long journeys. I guess its the non-fused parts of his spine taking the strain. It does not stop him going to music festivals in the summer, and sleeping over at parties though!!
    I have to try and make sure he looks after his spine.....and he is aware he needs to be careful in what he does.
    The next thing now is driving lessons....help!!
    Tracyx

    Report message13

  • Message 314

    , in reply to message 313.

    Posted by suelucy94 (U13851571) on Monday, 29th November 2010

    Hi Tracey
    It makes sense that it's the non-fused parts that can ache from time to time-but only when that's been suggested to me!
    When you say you make sure Cam looks after his back, do you mean by being sensible or does he do any particular exercises? I worry about Lucy falling over and hurting her spine but l also appreciate that as parents we can worry too much?!
    Driving lessons are an interesting one- at 17 l knew l was ready to learn to drive but once Robert hit 17, l thought he was too young!
    Take care

    Sue x

    Report message14

  • Message 315

    , in reply to message 314.

    Posted by madmum2816 (U13850009) on Monday, 29th November 2010

    Hi Sue
    The docs at Stanmore said the aches are due to the exra pressure put on the unfused parts of the spine.
    Now that Cam has been given the all clear to do everything he is keen to go to the gym. Hopefully building up some muscle with light weights and using the treadmill and cross trainer to build up stamina. My gym instructor can build up a programme for him that does not put too much strain on his spine and can keep him as flexible as possible. Swimming was mentioned at Stanmore as being particularly good.
    I mentioned falling over to the doctor recently but he said once the spine has fused it is as strong as any other bone - probably stronger as it has the metalwork supporting it. If there was a problem the rods and screws would bend and break - and that usually happens in the first year.
    Take care.
    Tracyx

    Report message15

  • Message 316

    , in reply to message 315.

    Posted by suelucy94 (U13851571) on Thursday, 2nd December 2010

    Hi Tracey
    Thanks for the information- with the snow, l've been concerned about Lucy falling over but l feel better about it now! Lucy has Wii Fit and likes doing the yoga and she enjoys swimming- needs to probably go more but it's winter.....
    Enjoy the snow!
    Take care
    Sue
    xx

    Report message16

  • Message 317

    , in reply to message 308.

    Posted by Rachael_2010 (U14611051) on Thursday, 2nd December 2010

    Hi Tracy and everyone else who has sent so many supportive messages.

    Well....today I got a phonecall....Lois has a date for her op. 25th Jan. Eeek!
    And thats not come about easily!!
    We last went to the hospital for final tests 3 or 4 weeks ago. I was told Lois would now have to wait until the Spring for her operation because all of the HDU beds are taken be emergency cases over winter. As you can imagine, Lois and I were gutted.

    Well, to cut a long story short, I have a collection of photo's that show Lois curve has not only progressed, but is now becoming more S shaped than C. It is massive. Her rib cage is now on her back. She is so twisted it is unbelieveable. She has worsened so much since July when we first found out. I sent these, plus a 2 page letter to the top consultant in Nottingham. It took a couple of copies but today, he replied and he was adamant she needs this surgery asap and has booked her in for the day he will be in, even though he usually only works about 2 or 3 days a month as he is semi retired.
    He is the top dog of scoliosis though...president of the scoliosis research society, royal apothecary.....so I have very confidence she will be ok with him. Scary tho.

    So, that was tonight. Not really sunk in yet. All Lois was bothered about was being able to see JLS on the 23rd!!

    Another thing we are going through is Lois is taking a steroid inhaler because her airways are either restricted or obstructed. This has got to be a result of her scoliosis?

    Yes, its amazing what will happen when you are forceful and speak to those in the know.

    Thank you again, and I will keep you posted. Please - any tips for hospital/ when Lois gets back home would be very much appreciated xxxxxxx

    Rach xxxxxxx

    Report message17

  • Message 318

    , in reply to message 309.

    Posted by christine (U10806837) on Saturday, 4th December 2010

    Hi Tracy
    Great news. Hope Cameron is having lots of fun.
    Christine x

    Report message18

  • Message 319

    , in reply to message 310.

    Posted by christine (U10806837) on Saturday, 4th December 2010

    Hi Rachael
    Fantastic news. Hope Amy is recovering well after her surgery.
    Christine x

    Report message19

  • Message 320

    , in reply to message 312.

    Posted by christine (U10806837) on Saturday, 4th December 2010

    Hi Sue

    Emma too gets these sorts of pains. We were told it is quite normal for this to happen, muscular aches and pains. Emma still has a small curve and a rib hump which sometimes is a little uncomfortable. Worth mentioning these aches at Lucy's next check up for reassurance. I think this weather doesn't help either.

    Take care
    Christine x

    Report message20

  • Message 321

    , in reply to message 315.

    Posted by christine (U10806837) on Saturday, 4th December 2010

    Hi Tracy and Sue

    Your message is very reassuring. I too worry about Emma in the snow, she must be sick of me saying "take care, watch what you are doing, don't fall over". Glad to know nothing can happen to her spine if she falls over - which she is prone to doing lol (even without the snow). Emma has started going to the gym to strengthen her muscles and we could all do with going swimming more. She also has physio exercises (bet you know how difficult it is to get teenagers to do physio regularly) because she has a habit of pushing her head forward as the metalwork goes so high up from T3 to L4. She has also got in the habit of breathing from the top of her chest and not from under her diaphragm.
    Enjoy the snow
    Christine x

    Report message21

  • Message 322

    , in reply to message 317.

    Posted by christine (U10806837) on Saturday, 4th December 2010

    Hi Rach

    Great news, yes sometimes as parents we do have to be forceful and fight for our kids, well done.

    Will post later with some tips for hospital and afterwards.

    Take care

    Christine x

    Report message22

  • Message 323

    , in reply to message 320.

    Posted by suelucy94 (U13851571) on Sunday, 5th December 2010

    Hi Christine
    At one of Lucy's check ups, we were told that aches would be quite normal. Lucy's aches starting happening 17 months after her operation so she has been very fortunate not to have had them before. I wondered if Emma and Cam had had a similar experience to Lucy. Mr Tucker said that we all get aches and pains, but if they got really bad and were prolonged, then to get advice.
    We see him next summer for Lucy's 2 year post op check up and l will have a list of things l want reassurance/information on. A list is vital at an appointment isn't it otherwise you leave and realise you didn't ask a particular question!?
    Take care
    Sue x

    Report message23

  • Message 324

    , in reply to message 317.

    Posted by suelucy94 (U13851571) on Sunday, 5th December 2010

    Hi Rachel
    Like Christine, we found Becca's journey to be very informative and very very similar to our experience of hospital and the op. I really recommend it. I can post nearer the time with tips re hospital and the first week or so back at home as well.

    Glad you have a date! You now have something to aim for. Enjoy JLS and Christmas though!

    Sue
    x

    Report message24

  • Message 325

    , in reply to message 323.

    Posted by christine (U10806837) on Tuesday, 7th December 2010

    Hi Sue

    Yes I am also a great fan of lists. Doctors' jaws drop when they see my list come out of my bag. It's best to be prepared, otherwise you always forget what you were going to ask and a year is a long time to wait to ask that question again.

    Waiting for April for Emma's next appointment, will start compiling the list shortly lol.

    Christine x

    Report message25

  • Message 326

    , in reply to message 325.

    This posting has been hidden during moderation because it broke the House Rules in some way.

  • Message 327

    , in reply to message 325.

    Posted by daniasmom (U14517840) on Friday, 10th December 2010

    Hello everyone,

    Hope you all are staying warm in this freezing weather.

    The countdown has started, Dania is due to have her "traditional growing rods" operation on 16 Dec., under Mr. Noordeen at Royal National Orthopaedic Hospital, Stanmore. I hope that the doctors will agree to undertake the operation because Dania still has a runny nose after suffering from a really bad flu.

    I've already written my lists smiley - smiley hope I will not forget anything!
    I will try my best to stay positive although I know it's easier said than done.
    Good luck to everyone on their next appointment, or operation.

    Take care,
    Mai

    Report message27

  • Message 328

    , in reply to message 327.

    Posted by madmum2816 (U13850009) on Saturday, 11th December 2010

    Hi Mai
    Will be thinking of you over the next couple of weeks. Hopefully Dania will be recovered from her flu by the 16th.
    Yake an extra duvet if you are staying in the parent accommodation - it can get really cold in there - and bring a bedside lamp. Take some sticky labels so you can label all your bits and pieces in the fridge, along with a couple of mugs.
    The staff are great on the ward and you really are in one of the best places for this type of surgery.
    Good luck - hope all goes well and we wish Dania a speedy recovery!
    Love Tracy and Cam xx

    Report message28

  • Message 329

    , in reply to message 328.

    Posted by daniasmom (U14517840) on Saturday, 11th December 2010

    Hi Tracy,

    Thank you so much for your kind wishes. I will remember to too take things you've mentioned, without your advice I'll be freezing in bed smiley - smiley

    Wish you, your family, and everyone A Merry Christmas, and a wonderful New Year.

    love,
    Mai

    Report message29

  • Message 330

    , in reply to message 327.

    Posted by christine (U10806837) on Sunday, 12th December 2010

    Hi Mai

    Great news. Will be thinking of Dania on 16th. Remember to take good care of yourself as well, take breaks when you can. Stay positive, try to focus on the long term.

    All our best wishes

    Christine, Emma and Megan xxx

    Report message30

  • Message 331

    , in reply to message 327.

    Posted by suelucy94 (U13851571) on Monday, 13th December 2010

    Hello Mai
    I hope all goes ahead as planned for the 16th- you will be in safe hands.
    I stayed in the parent accommodation in May 2009 and the room was cold. Tracey suggests an extra duvet and l would add to that some bed socks and even a hot water bottle, especially as it's supposed to be getting colder later on in the week. The room was absolutely fine otherwise and is only a minute's walk away from the ward- brilliant!
    As Christine says, try to look after yourself as well. go for a short walk in the grounds or have a coffee. You will be all be fine and well looked after. Everyone from the surgeons to the healthcare assistants and the porters were so professional, caring and kind.

    We will be thinking of you all
    Take care

    Sue and Lucy
    x

    Report message31

  • Message 332

    , in reply to message 325.

    Posted by suelucy94 (U13851571) on Monday, 13th December 2010

    Hi Christine
    I did laugh at your message and had a great image of the doctor's jaw dropping when you walk in! I am a great fan of lists and l already have some questions for next June -they are in my head at the moment though!
    Sue
    x

    Report message32

  • Message 333

    , in reply to message 332.

    Posted by madmum2816 (U13850009) on Wednesday, 26th January 2011

    Hello everyone and Happy New Year.
    Tracy and Cam x

    Report message33

  • Message 334

    , in reply to message 333.

    Posted by christine (U10806837) on Wednesday, 26th January 2011

    Hello Tracy, Cam and everyone

    Happy New ~Year.

    OMG we're back in business. BBC said they couldn't start the discussion up again although they said how popular it was. Wonder why they changed their mind. Doesn't matter - hope people find their way back and start posting again.

    Christine x

    Report message34

  • Message 335

    , in reply to message 334.

    Posted by madmum2816 (U13850009) on Thursday, 27th January 2011

    Hi Christine!
    Yes! Its great the thread has carried on!!! My post was a 'test' one to see if it appeared.
    I hope everyone else starts posting - it will be good to get updates.
    Tracy X

    Report message35

  • Message 336

    , in reply to message 335.

    Posted by suelucy94 (U13851571) on Wednesday, 2nd February 2011

    Hi Tracy, Christine and everyone!
    I am soo pleased to see this thread is up and running again and look forward to sharing our updates.
    A belated Happy New Year to you all!

    Sue
    x

    Report message36

  • Message 337

    , in reply to message 336.

    Posted by christine (U10806837) on Thursday, 3rd February 2011

    Hi Sue

    Great to hear from you. Yes, it's great news isn't it. Looking forward to all your updates too.

    When the BBC said they couldn't reopen the discussion I opened another one under the simple title of Scoliosis. Have had a few posts on there too. Just replied to someone called IceDragon who was at a very low ebb. Maybe you and Tracy could take a look too and offer your support also.

    Christine x

    Report message37

  • Message 338

    , in reply to message 337.

    Posted by madmum2816 (U13850009) on Saturday, 5th February 2011

    Hi Christine and Sue
    Will have a look at the Scoliosis thread.
    Tracyx

    Report message38

  • Message 339

    , in reply to message 338.

    Posted by daniasmom (U14517840) on Tuesday, 26th April 2011

    Hello everyone!

    Wishing you all a Happy and Blessed Easter smiley - smiley

    Mai

    Report message39

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