View Full Version : New & In shock
29th June 2007, 01:25 PM
We have just been told(4days ago) by our GP that our 11 year old daughter has idiopathic scoliosis (thoracic). She is being referred to Kings College Hospital and told that she may be referred to Stanmore. I'm afraid I was to upset to ask questions or know what to ask, we were told she should stop sport. This is very distressing as she is a keen footballer and plays at district level as well as an able swimmer, competing for her club on a regular basis. After finding your site and reading the various comments, I am beginning to calm down. However I would appreciate any feedback/guidence on whether she should stop her trainning sessions, and any ones experience of this. She was let home from school as she was feeling a little upset, and we have been asked to let them know if she needs specific help etc. My first response to this is everything should carry on as normal - however i am acutely aware of our GPs voice 'stop sport' - does anyone have any advice? I am also realising that this is just the beginning of our journey and am greatful for this site as information appears to be very difficult to get hold off.
29th June 2007, 01:37 PM
Hello and welcome! You've come to the right place for support and I'm sure you'll find loads of help here!
I was diagnosed with adolescent idiopathic scoliosis also (a few years ago now though!) however mine was a lumbar curve. At the time I was a competative swimmer too, competing for my club regularly. I can only say what my experience was and everyone is different, but I did not stop swimming until I went for my operation. I even went in for pre-op on the Monday, was let out on Monday eve til Tuesday eve, and went swimming on Tuesday before going back Tuesday evening for my surgery on the Wednesday!
BUT everyone is different and there may be a reason why your GP has told you to stop sport? Perhaps you could arrange another appointment and ask why?
29th June 2007, 03:59 PM
Hi CaliK and :welcome:
We've certainly NEVER been told to stop sport and in my experience (a BIG sorry to all the wonderful GPs out there :kiss:) many GPs seem to know next to nothing about Scoliosis. Our own journey has been littered with medical people who have just held up progress. Make sure your daughter sees an expert and fairly quickly. Sorry to be a bit negative but my daughter's curve grew more than 10 degrees between diagnosis and starting treatment and now surgery seems to be inevitable.
Life with a child with scoliosis is a bit of a rollercoaster ride but you will find that life goes on & returns to normal a bit (until the next appointment anyway). We are all here for you, so any questions, just ask!
29th June 2007, 04:05 PM
Hi CaliK and welcome,
I've never heard of anyone stopping sport because of scoliosis.Most doctors I've encountered actively encourage swimming as it strengthens back muscles and keeps fitness levels up.Football is equally ok to do,scoliosis is a curvature of the spine, it's not usually a problem for active young women.
I can understand how upset and shocked you and your daughter must be but try not to worry too much at this stage, there may not be any need for surgery.
29th June 2007, 04:08 PM
I really can't think of any reason that she should stop sports as long as she is comfortable. Once you get as far as the consultant, and possible treatment, you may be told specific things to avoid, but really nothing has changed other than that you now have the diagnosis, so I think the GP was probably just erring on the side of caution.
Can you not be referred straight to Stanmore? It's probably worth going back to the GP, or asking to speak to the practice manager (as they can look up who the local GPs have contracts with and thus where you can be referred directly) and asking for the referral to be to either Stanmore or Great Ormond Street (they share some consultants actually!) as this will be faster than going through someone at another hospital first.
I'm sorry for what's brought you here, but nevertheless :welcome2: :-)
29th June 2007, 08:08 PM
Hi there and :welcome:
I'd certainly second what the others have said, I do agree that many GP's don't have much idea about scoliosis, even some general orthopaedic consultants are lacking in knowledge as it is such a specific area, which is why you need to make sure you are referred to a specialist spinal consultant at one of the main centres Titch has mentioned. (Assuming, of course, that you live down South!)
Sport, and swimming in particular, is generally considered to be of help as the others have mentioned, as it helps keep the back muscles strong and healthy. In fact swimming is usually one of the first things you are allowed to do post-op (at around 3 to 4 months), except for the obvious walking of course!
I'm sorry for the circumstances that have brought you here, but glad you've found us as hopefully we can help support you through your daughter's treatment.
29th June 2007, 10:56 PM
I agree that many GP's don't know what they are talking about when it comes to scoliosis. I had scoliosis as a child and sadly not enough was done for me back then. Now, in my 30's my GP told me that as I am an adult now, and in his opinion not worth see a specialist anymore, that I may get worse and end up losing my mobility altogether. Luckily, I didn't really listen to him and the amazing people on this site have made me realize just how much is possible. It is very much the old school of thought that scoliosis means stop all activity. I bet the specialist will not agree....
I am so glad you are here with us as I know the other parents will be offer you so much help on this journey. Your daughter is so lucky to have you.
All the best,
30th June 2007, 10:04 AM
That's weird - we were told to carry on as usual regarding sport - in fact to do as much as possible to keep the spine flexible. The more flexible the spine, the better the correction achieved should surgery become necessary.
You definitely need to see the specialist ASAP - only they would be able to say for sure. I agree that a GP is not specialized in scoliosis and are probably just acting cautiously. When we fist saw our GP I told them what I thought the problem was rather than the other way round. She looked at Lauren's back (standing straight) and said "yes there does seem to be a slight curve". Lauren is actually a case for surgery so i'm glad I had a second opinion!
Good luck with it all,
30th June 2007, 11:58 AM
Ok, time for a moan now. (Sorry to hijack your thread CaliK).
When Immy first saw our GP about Scoliosis (which had been pointed out by her 17 year old gym coach) the GP said "Oh yes she does have some asymmetry of the spine but we're all asymmetrical to some degree. Don't worry about it. You could take some photographs to see if it gets any worse"! When I insisted that we wanted a referral, she referred Immy to a general Orthopaedic consultant. This guy had x-rays taken and then wrote us a letter to say that Immy had a 28 degree curve and that he'd see her again in a year!!! In a 9 year old??!! 10 minutes investigation on the internet and I knew more about the risks of progression of scoliosis than he did!
We're now very happy with her consultant Mr Ashley Cole in Sheffield. We have total confidence in him. So I'd say same as Titch - go straight to Stanmore if you can.
Sorry for the rant....
3rd July 2007, 11:23 AM
Hi there. Just to add my voice to the others I would say your GP is being cautious because he doesn't know enough about the condition. My daughter is 7 and was diagnosed at age 4. She was 61 degrees and is now 76 degrees. We have always been told to carry on as usual regarding sports. Swimming was actually encouraged! The only restrictions come after the growth rod surgery which will be no sports for 3 months, then anything except contact sports.
You can't blame your GP for being cautious, particularly as they must be in fear of litigation over everything they say!
4th July 2007, 11:21 PM
Hi there. I remember the shocked, numb feeling when we found out our girls had scoliosis. It does get better honest!
AFter our first visit to Nuffield Hospital, one of the things I rang up about (because I forgot to ask when we were there) was "was it okay to carry on with PE, and is there anything Chloe shouldn't be doing" as she was supposed to be doing gymnastics at school. Both the surgeon and physiotherapist said there was nothing she shouldn't do at all and as long as she was able to, she should carry on as normal as she couldn't do herself any damage. My reckoning on this is, if something hurts or feels uncomfortable, then stop. Otherwise, I would carry on. I have to say Chloe isn't too chuffed about this - she would far rather do nothing!
I hope you get your referral soon - it helps when you know more information. As the others say, get referred to a scoliosis specialist - no point wasting time with anything less.
Oh, and welcome.
PS What neck of the woods are you from?
11th July 2007, 06:06 PM
Welcome! I'm Joy, I'm 18 and from Canada. I had surgery in 2003.
I think your GP is just being cautious. I also had one GP tell me I should stop sports but my surgeon always encouraged me to be as active as possible, except when I was recovering from surgery. I was on the track team at school and played soccer last year so being active with scoliosis is definetley possible. But there might be some other reason why your GP has recommended this, so of course you should be careful! Maybe you could go back in the next week or so and ask why he recommended that she stop sports-
I would also try to get referred straight to a scoliosis specialist - it jsut isn't worth the waiting, only to see someone who can't help you, and it isn't a good idea to be treated by someone who doesn't really know what they're doing.
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