The waiting game of Scoliosis

Well, it ocurred to me that in between doctor visits and sewing bodysuits, I wasn’t taking enough time to communicate with others – in other words: sorry no blog posts lately.  But, then I thought again about how my intermittent and infrequent blogging is like the disease of scoliosis – kind of a drawn-out, slow process where you have to aquire a bunch of information REALLY FAST only to sit and wait days, months, years, lifetimes – to see how the disease progresses.  I guess we are in that stage where we are in a good rhythm – “C” is still holding at about 50degrees with her Cheneau, is comfortable wearing it 22-24 hours a day (especially now that it’s getting colder outside) and we have a closetful of dresses and bodysuits to help her stay stylish, comfy, and glamorous.  So, I guess there’s not much to say – once you get in a rhythm with this disease – the thrice-yearly ebb and flow of x-rays, therapy, checkups, brace adjustments – then all you CAN do is wait.  But, I’m vowing to spend a little more time in the near future blogging on things that might help your lives a bit more.  So, those of you who are in the crazy stages of the onset/discovery of the disease or the bumpy times where change in the x-rays create a change in the plan, I’ll try to give tips, tricks, advice, and support on a much more frequent basis.  As always, email me or post a reply if you have questions, needs, or concerns.  I’m happy to help.

In the meantime…happy living to everyone, while you anxiously wait on this disease…

Tina

9 thoughts on “The waiting game of Scoliosis”

  1. Hi,
    My daughter was diagnosed yesterday with a 40 degree curve and two others 36 & 31. I am researching the cheneau brace with schroth therapy. Have you combined the schroth therapy with the brace and have you made any progress?
    Thank you.

    1. Hi Karen. How old is your daughter? It would help me formulate a response. My daughter is a bit young (at 9) to make a major improvement through Schroth yet, we are just trying to slowly learn the basic concepts that she will use over the rest of her life. I think it’s a great system and many have found a lot of improvement by using it. In my opinion, strengthening exercises, when done properly to attack the curves, can never hurt, so why not try? We have had amazing results, however, from the Cheneau. We drove a long way to get it (14 hours), but it was totally worth it. My daughter is very compliant, though – she wears it between 22 and 24 hours every day without complaint. The man who made it for us is incredibly wonderful (Luke Stikeleather at Othotic Solutions). It sounds like your daughter’s curve is pretty advanced for a first discovery, but not unmanageable. Heck, we went up to 67 degrees at one point! Depending on her age, she could see great results from both treatments. Send me an email anytime with questions (embracedincomfort@yahoo.com). I was where you are not so long ago and I know it’s overwhelming.

      1. Hi Tina,
        Sorry to take so long getting back. My daughter is almost 11 ( january ). last week I took her to fairfax to get the cheneau brace, she is doing VERY well with it. Next week we will be leaving for scoliosis rehab. I believe these two options are the best course of action for my daughter. Our DR… seems very set on surgery.
        This is very overwhelming… all the information on what may work and what will not and what there is scientific proof of and what there is not…. OMG.
        Karen

    1. Ann: She was 67 before the Cheneau, went to hovering just above/around 50 in brace after about 4 months in-brace. 24 hour out-of-brace x-ray showed similar (hovering around 50). I wouldn’t know any further than 24 hours out-of-brace because she wears it every day, 22-24 hours a day. I hope that helps! Have a great day.

  2. Hi,

    I am an adult scolosis patient and am in the process of getting myself fitted.
    The appt is this coming thur but I am already wondering what is life with the spinecor? No more nice pretty clothes with big neckline. No more sleeveless.
    Could you please advise?
    Thanks.

    1. Well, Hwai, thanks for your post. I would have to say it depends on where your straps end up going on your body – some have them pass across the chest, some under the armpits. It all depends on your curve. I’ve made bodysuits custom for ladies in the business world to use under their Spinecor and have had specific requests for a plunging neckline so they can continue to wear their wide-neck blouses – so, it may still be possible. It’s also possible to dress fashionably, but in a more conservative manner to cover the brace and if fashion is something you find pleasure in, I’m sure you will come up with new and creative approaches – and then can share with us! As for sleeveless, I’m pretty sure cap sleeves are reasonable, and sleeveless if it covers the entire shoulder. We find stretch knit fabrics drape the best over a brace. Again, after you get fitted, you can determine. And, please let me know – email me or re-post here so that others can learn from your experience. The most important thing is your health, and I hope that the Spinecor can help you.

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