Blog for People with Scoliosis

[secretHeidi]

Hi all. I feel a bit cheeky posting on here but my mum uses this site a lot and thought it might be a good way to tell people about my blog. I just started a week or 2 ago a blog about my experience with being diagnosed with scoliosis as a teenager styleyourscoliosis.blogspot.co.uk/ At the time I felt very alone and didn't identify much with any other teenagers talking about their experiences on the web, so I started this to try and reach out to girls (and boys) who have also been diagnosed with the condition. I've only just started and it's not been well developed yet...at the moment there is an emphasis on style but I want to go into other areas too...Just wanted to post so if you have any teenagers with scoliosis or want to learn more about the condition perhaps you could take a look. Let me know about your blogs too and I will go and check them out

[KateShmate]

Hi Heidi
I know you're a lot older, but my 6YO daughter was diagnosed with scoliosis this year - she's in a boston brace at the moment; do you still wear a brace now?
We need some serious advice/recommendations for seamless vests to go underneath?! She has tried wearing normal vests inside out but gets quite bad pressure sores from them.
I managed to find some cheap seamless vests in Primark, but my daughter is quite skinny and so had to get a smaller size to make sure there were no wrinkles, but this meant it was too short (she normally pulls the vest up and back over the brace).
Sounds like a brilliant blog you've got going though - will have a read and hopefully find lots of other tips on there! Thanks :)

[glisters]

Kateshmate, you can get tubular bandage online e.g from midmeds, which could be rolled over at the top of the brace. Might be trial and error to get the right size though.

[KateShmate]

Thank you glisters ! Will definitely try that out :) Do you have a DC with scoliosis?

[glisters]

Yes, but DD is all grown up and gorgeous! I know there's a lot of depressing stuff if you surf the net, and sometimes the doctors don't like to promise good results, but the brace improved the curve and kept it stable until DD finished growing. I think each case is really individual - different rates of growth, skeketon, curve, etc. One tip - if it's rubbing at the edges then make an appointment at orthotics to get it trimmed. DD wore the brace for 23 hours out of 24, with some occasions off e.g. a school trip away.

[KateShmate]

Ahh that's brilliant to hear glisters :) So glad to hear that the brace improved your DD's curve!
Did she have a boston brace too? It's so hard not to do the research; and I hate it because every time I do I find negative things about the Boston and that it doesn't work. Completely forgotten what it is called, but the method where they use the material straps to bring the curve back 'round'? Apparently that it supposed to be really good, but isn't offered on the NHS - I know that money shouldn't be the issue if this could be the cure, but no one can tell me an answer for definite and it is so hard to go against her Consultants advice.
We've been so lucky with our braces and not had any problems (touch wood) - her latest one they even put thick memory foam around the hips as one has started to become quite prominent. My DD wears hers 23/24 hrs too - we aren't strict but now that she is used to it, she forgets about it. Thank you so much for the tips, is brilliant to be able to talk to someone has been through it all already!

[glisters]

Yes, it was a Boston. We briefly considered the other method you mention (can't remember the name!) which was offered at a private hospital (where our NHS Consultant worked too!) But NHS doesn't let you 'buy in' private treatments, I think you have to go down the totally private route perhaps? Anyway, there didn't seem to be too much proof for the other method at the time so we went with the Boston.
Yes, I went through a lot of looking for reasons and answers and getting very stressed which is not good for anyone, let alone DD, but I think in the end it's best to go with the treatment and try to keep the treatment etc as an annoying part of life but not the be all and end all! I know it's easier said than done though!

[KateShmate]

SpineCor?!
Yep we discovered the same problems re. having to go totally private. We are lucky that the hospital DD is being treated at is our local one and just 5 minutes down the road, but the nearest hospital offering SpineCor is around 3 hours away. It worries me that if something went wrong then we couldn't just 'pop' to the hospital - we've had lost screws, cracks in the brace, sore hips etc and have the 'plaster room' number and go and see the same orthopaedic specialist (same man who fits the boston cast) every time - he is lovely and fits us in on the same day.
I also worry that if we run out of money then DD would have to go back to the bigger and more obvious Boston brace when she is going through puberty, which probably would be a lot harder than if she was used to it. We could afford it currently, but we also have 4 younger daughters - as scoliosis is in our family, there is nothing to say that any other DD's may develop scoliosis too. If we could afford it, and DD started getting self conscious about the brace around 12/13 when they are first going into puberty, then I would definitely look further into the SpineCor brace. I think we're lucky that she was diagnosed so early, to be honest, as as a 6Yo she's still excited to tell friends about new braces and not self conscious about it at all etc, so has taken it easier than, I presume, a teenager would. I guess that's one positive thing!!

[SavoirFaire]

Hi Heidi. Will take a look at your blog. Good idea. Just wanted to say that I came out of the other end of this. Unfortunately I had to have surgical intervention - 2 harrington rods - but the results were great and long-term effects minimal. Absolutely no one I knew had heard of scoliosis when I was going through it - 20 years ago! - and I would have loved to have read a blog from someone else. Good on you!

[permaquandry]

I think a blog would be a fantastic idea. 2 of my great friends, one from school and another from work both had the condition. One had a brace, then a rod (which was later removed) and the other had only a brace. Both adults with kids now and looking beautiful.

I also have a friend with a niece who has been diagnosed. Not many people have heard of scoliosis but it's surprising that I know 3 people with the condition (all unconnected).

I will pass on your blog to my friend. Best of luck to you and the others on here with scoliosis/children who have it.