View Full Version : Another Newbie
5th May 2007, 07:41 PM
This is my first ever post to a forum. And very exciting it is too!
I have recently found out that my 9-year old daughter has a curve of 31 degrees and needs to wear a brace. I have spent the last few days searching the internet and have found these forums extremely useful. Thank you everybody.
We are considering the Spinecor brace and would love to hear from anyone with relevant experiences (good or bad), particularly in the UK.
Looking forward to hearing from you....
5th May 2007, 08:05 PM
HI and :welcome: i cant offer any advice on the spine core brace.Have read about it though.As my daughter was pass the bracing stage when we found out. it was never something we looked any further at.The folks on here are realy helpful and im sure they will be able to give you some advice. :niceone:
6th May 2007, 12:22 AM
My 10 year old daughter Lucy is currently wearing a brace although it is not a Spinecor. She is wearing the rigid boston brace. Gerbo has experience of the Spinecor as his daughter is currently using one.
Lucy has a 43 degree curve and has been wearing her brace for almost 2 years, so far it has held her curve stable. :niceone:
Where abouts in the world are you? Which hospital are you under? We go to the Nuffield in Oxford and see Mr Fairbank.
6th May 2007, 01:16 AM
Hi there :welcome:
I don't have any personal experience of braces of any kind, but I do know that the Spinecor brace is used by the Children's Hospital in Sheffield, as the consultant who did my surgery (Mr A A Cole) does most of his work with the kids there.
6th May 2007, 09:12 AM
Hello everyone and thank you for your replies.
Nicki - We live in Rugby and are seeing Mr Marks in Birmingham. He wants Imogen to wear a rigid brace; we are very worried that this will ruin the rest of her childhood, so are looking at alternatives. How does Lucy get on with her brace? Is she able to continue with hobbies, etc? Immy is a very keen dancer and gymnast. Currently spending around 12-15 hours a week in class (and many more prancing around the garden or house!) She will be 10 in June so is probably in the same school year as Lucy!
Thanks again for your support. Gilly and Kidz Taxi too.
6th May 2007, 05:43 PM
Hi Laura and welcome to SSO. I'm afraid I don't have much experience of braces, especially with a 9 year old, but both Gerbo and Sealy have kids in the spinecor brace and sing its praises. It's something that won't ever be an option for us as my daughter's curve is too large, so i'm afraid i've never really researched it in any way. I'm sure they'll be along soon to answer any questions you may have.
6th May 2007, 06:55 PM
Hi everyone i'm Imogen, Laura's daughter. I'm not going to stay on my mum's username forever, i'm just going to be on it until a form'sbeen sent in. And anyway i'm the one with Scoliosis not her!
I am 9 [soon going to be 10] and i would like to hear from people around my age.
I'm really looking forward to getting my own username, and chatting to people on Scoliosis support.
6th May 2007, 09:06 PM
Hi Imogen :wave: , glad you've joined us!
I'm afraid I'm a bit older than you (about 40 years!!!!), but there are loads of young 'uns on the site who will enjoy chatting to you.
Hope you have fun :D
6th May 2007, 10:16 PM
Hello Immy and Mom. Welcome to SSO.
6th May 2007, 11:21 PM
Hi Laura and Imogen,
My daughter Megan who is 11 also wears a rigid brace. She has a curve of 40 degrees and is being treated at the Nuffield, Oxford (she shares the same orthotist as Lucy). She's been wearing it for 2 years now and it seems to be holding the curve at the moment. We did consider spinecor but Megan is happy in the rigid brace and it appears to be working. We decided that to change to spinecor at this stage would be too big a risk and the stress of the extra journeys counterproductive. Saying that, if it had been on offer at Oxford we would have jumped at the chance to try it and the results that I've seen look very good.
Megan copes very well with her brace, it hasn't stopped her doing anything. She takes it off for sport, the more exercise the better, especially anything that will strengthen those torso muscles. She swims a lot too.
Like Nicki said, Gerbo is the expert on spinecor, although he hasn't posted for a while.
Imogen, I'll try get Megan to post of few words about her brace (it's an amazing multicoloured one).
All the best,
7th May 2007, 09:23 AM
Hi! I'm Joy, I'm 18 and I'm from Canada. I never wore a brace because my curve was too bad when I was diagnosed. (I had surgery 4 years ago)
Ive know quite a few kids, online and in real life, who adapted really well to wearing a brace. I dont know anything about the spinecor brace, most of the kids I know wear a boston brace. Sorry I can't be more helpful, but I wanted to introduce myself anyways.
8th May 2007, 10:38 PM
Hi Laura and Immy
We don't have experience of bracing but I think we soon will do. My eldest daughter is on a waiting list for surgery for her double curve. My youngest daughter is to see the specialist at the end of May, and I am trying to gear myself for her being braced. I would far rather not, and generally feel the same way as you do - however, if it stops her curve getting as bad as her sisters with all the stiffness it has brought her, then we'll do as we're told.
I'll get Pom to say Hi to you Immy, Pom is 9 and in year five (or you can pm her if you like - user name Pommygranite)
8th May 2007, 11:00 PM
We will probably do as we're told too. But it is very frightening. Immy's username is ImmyUK, she feels very special to have scoliosis and is enjoying the attention but I don't suppose she will enjoy the reality of the brace. She is in year 5 too and would probably like a "pen pal", Pom sounds great. Where do you live? Perhaps we could meet up some time?
8th May 2007, 11:08 PM
Thank you for telling me about Megan. She sounds like she's coping well with the brace. What size was her curve when she was first prescribed bracing? She must have been about the same age as Immy is now. I imagine we'll go with the rigid brace. How could we know more than a specialist?? We just feel that we need to look at every option because we feel totally impotent right now and that's not a nice feeling. I'm sure you've been there!
9th May 2007, 09:09 AM
Hi Laura, pleased to see you managed to find this forum. Welcome! Don't need to tell you anything more about spinecor, as we discussed it over the phone already. Feel free though to post any further questions or issues or insecurities or whatever. Making decisions in these type of circumstances is so difficult, as there is so little hard evidence of what is best and ofcourse you want to be sure you are doing the right thing. Personally, as I have said, I have no doubt at all that you (and Imogen), have nothing to loose by at least trying the spinecor.
Imogen, a really good forum for young people is www.spinekids.com. It is mainly young people like yourself posting on there. Worth to go and have a look.
9th May 2007, 10:32 AM
Thanks for all your help. I have registered with the NSF forum but as yet am unable to post. GRRR! I have sent the administrators an email. I am still watching you all, so say "Hi" when you're next there!
We are getting cold feet about Spinecor: It's so hard to find anything out. I have sent an email to SCH and will let you know what they say. In the mean time we are still waiting for an appointment with the orthotist at BROH. X-ray in MARCH showed a 31* curve (28* in November but with a different consultant) - I thought early treatment was important?!! :nut:
Many thanks to "Mrs Gerbo" (I do remember her name, just trying to be discreet), her words of wisdom based on experience were most comforting.
9th May 2007, 12:32 PM
Mrs gerbo (Louise) will be pleased to hear you appreciated her input. Feel free to ring again for a chat if you need to. Lack of relevant support was so frustrating when we started off with all this.
re spinecor; I'd nearly have to ask you; what exactly do you want to find out to enable you to make a decision??
I remember though how difficult i found it to make that decision to try something different then what we were advised by our consultants in birmingham. Do remember though, if you would have lived in the sheffield area, you would have been referred there, you would have been given the spinecor, and you would never have worried about it.
at the time i did phone and speak to mr Cole whose advice was that "if he had a daughter with scoliosis, he would use the spinecor"
We have never, never regretted that decision, and if anything, i wished we would have been able to start earlier, when the curve wasn't as bad and still more flexible. similar and consistent views are constantly being expressed on the NSF forum (as you know)
However insecure you feel (understandable, as there are no certainties) don't let it paralyse you. Continue what you have set out to do, as both options are open to you. Get a spinecorfitting and see what it does and how it feels and how much correction you get whilst awaiting your appointment in Birmingham. Once you've been though those, i think it will become a bit more clearer to you what to do.
take care and feel free to keep on asking!!
9th May 2007, 04:39 PM
Thank you for telling me about Megan. She sounds like she's coping well with the brace. What size was her curve when she was first prescribed bracing? She must have been about the same age as Immy is now.
Yes Megan was also 9 when she was diagnosed and with a 31 degree curve. Although the figures on that first X-ray are up for debate as at each appointment we were told there was no change. It then turned out that on the subsequent 2 digital X-rays we were looking at a 40 degree curve. I think there is some error but also the curve has worsened although we'll never know if it was prior to her receiving her brace or not. I know exactly how you feel with all the waiting, especially if you're seeing a deterioration.
Good luck with your decision with spinecor, I know it's not easy, especially when orthotists themselves stick to the old style braces. There seems to be so little research into scoliosis.
All the best,
10th May 2007, 08:12 AM
Gerbo, your wise words have once again spurred me into action! Have made an appointment with GP - unfortunately earliest possible is next Wednesday- to ask for referal to Mr Cole. Have also spoken to Helen Wainwright and was originally offered 15th June as the next available date but now need to wait & see what Mr Cole offers. I don't know whether this means before or after 15 June. I have emailed Mr Cole to get the ball rolling. Still nothing from Birmingham.
H - Immy will be sending a PM to Pom, but not until her homework is done!
Sam, thanks for the info. We're hedging our bets at the moment. What we've seen of Spinecor looks ideal for Immy, but we have concerns about its lack of use in this country.
10th May 2007, 09:20 AM
don't get mixed up with the various appointments options. Your key person is mr mills who is the orthotist and would asess your daughter for suitability for spinecor, and he can do that totally independent of any consultant input. We saw him privately (via helen wainwright) to get the ball rolling.
an nhs referral to mr cole is only needed to get the spinecor on the NHS. There is likely to be a longer wait for that. Mr Cole's input in the actual treatment is really minimal, he leaves most of management to mr mills and in a way is quite on the fence about the benefit of bracing (in general).
10th May 2007, 11:31 AM
Have just been reliably (I assume) informed that the Spinecor brace is used in the following "places":
Stoke on Trent
Cambridge (private only)
Middlesborough - James Cook University Hospital
Just thought I'd let you know.
10th May 2007, 11:54 AM
That's really good news! I had thought it was only available in Sheffield. Hopefully this means that more and more specialists are hearing about it and are prepared to use it :-)
11th May 2007, 10:02 AM
Gerbo - Helen Wainwright told me that Mr Mills needs a referral to see Immy. Perhaps he has changed the way he operates since you first went to see him?
On a different matter - probably being paranoid but - my son, age 8, has a very stiff back. He can't tough his toes and his back is very rounded when he tries to. Looks perfectly straight though. Could this be related to Immy's scoliosis?
11th May 2007, 12:37 PM
hi laura, indeed, must have changed his practice there
re your son; really not sure, unlikely to be related to scoliosis (but i am "happy" to be corrected on that. Ask your gp to have a look.
still not on nsf?
hope you're ok and coping
11th May 2007, 02:41 PM
Still no NSF. Have sent them another message. I notice that their calendar is way out of date so maybe they're having trouble keeping on top of things. It's a shame I can't post as a guest, just to get the adminitrators to notice me & take action. Still reading daily though.
11th May 2007, 03:42 PM
laura; let me know (if you want by private message) how you are trying to sign in (under what name etc.) and what happens, or doesn't happen. I can try to ask from "inside"
11th May 2007, 09:28 PM
Gerbo, re NSF:
When I go onto the website it says "welcome, LauraUK." top right and bottom left it says "you MAY NOT post", etc, etc. If I try to post I get a message saying that I'm not allowed to for one of several reasons, the most likely being that my account has not yet been activated. Just incase you haven't guessed, my username is LauraUK.
Still no news from consultants or orthotists... Still I suppose that's an extra week brace free!
By the way everyone, Immy LOVES this site and has found a great buddy to correspond with. THANKS for helping to make this whole thing a more positive experience.
21st May 2007, 10:40 PM
Just a quick question... Immy has pointed out that she has very prominent bones just below her neck (cervical vertebrae??). She says that none of her friends have this. I have had a look and agree with her. This must be a fairly new development as she is quite bruised from doing forward rolls, something that's never happened before. Anyone experienced anything similar or have any ideas?
22nd May 2007, 08:15 AM
My daughter has very prominent bones below her neck but her curve is in the cervical area. I'd definitely get it checked at the next appointment to be sure. They don't always x-ray that far up (from previous experience, going up and down to x-ray when they realise!) so it maybe that they need a cervical x-ray to check.
Hope that you get on ok
22nd May 2007, 09:26 AM
it is normal for the 7th cervical vertebra, and the ones below it, to be more prominent. I bet your daughter is very slender, so it might be more obvious than in her friends. Your GP, when you see him, is likely to confirm
22nd May 2007, 11:48 AM
Thenks Ella & Gerbo,
I'm sure I'm just being paranoid. It does seem funny that she is only bruised recently but probably coincidental. She is very slim.
Anyway, we're seeing Mr Cole in 2 weeks so will ask him then. Can't wait!!
Laura (I only edited this because I couldn't get the smilies to work!)
23rd May 2007, 08:51 AM
Hi Pom I am going to Shefeild in 13 days to get my Brace!
But it's not going to be a hard one it's going to be an elastic band one
23rd May 2007, 03:33 PM
Oh Dear, have just heard from Helen Wainwright that Immy's appointment is postponed until 15th June. Not looking forward to telling her! She's really looking forward to it for some strange reason... Will be editing this post before she gets home from school!
23rd May 2007, 03:48 PM
Have told her and she's fine with it.
23rd May 2007, 03:49 PM
I've been a bit late catching onto this thread, I always seem to miss threads somehow! Just wanted to say hi to you and Immy! I see that you are going to go and see Mr Cole now, but thought I'd let you know that I was treated by Mr Marks and Mr Thompson at the Woodlands in Birmingham for my scoliosis and am still seeing Mr Thompson for disk problems!! I have had my up's and downs with them and did consider a second opinion at one point but I think I was just too lazy to sort it out! I wasn't braced at any point though so can't really say much about that.
24th May 2007, 10:18 AM
Hi and thanks Jess. Finding this forum has been a real godsend, everyone is so helpful. I can get my daily scoliosis fix without boring friends and family with my obsession. I wish I'd known about it earlier; I think I'll suggest to SAUK that they point new members in this direction.
SAUK very kindly sent me a contact list of people in similar situations. The problem with this was that it seems quite an imposition to contact people by phone. I also spoke to some people with absolute horror stories which just fuelled my fear. Forums give a much more balanced view in my opinion.
24th May 2007, 01:15 PM
I agree Laura. The list I got from SAUK had only one that was a case of infantile scoliosis, and they lived in Scotland. It wasn't exactly as if I could meet up for a cup of tea and a chat. Hopefully now that more people have email and the internet, it's easier to make contact with people. I don't know if they give out email addresses now do they? They certainly didn't a couple of years ago.
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