spinecor

[gerbo]

Celia, been around but not much to say at the moment, as i feel rather in limbo, with daughter being completely unbraced whilst we are waiting for a fitting appointment. Trying not to think to much about scoliosis as at times it gets me too worked up.

Melissa, woulldn't get too worked up about this > then 30 degree issue, I think it is well known that a curve over 30 degree has a higher chance of getting worse and that rapid growth is the biggest risk factor, hence the importance of trying to keep curve below 30 degree until past PHV.

If the spinecor will do that for you (as it is doing now) you are going to be OK hopefully. Clearly the bracing they are talking about in the PHV study we do not know anything about, i.e. type used, correction achieved, compliance etc.

all of us know that whatever we try, there is never a garantee that our child will not end up having surgery, but at least we know that, on current evidence, we are doing as much as we can to prevent this happening. (and remember, even surgery isn't the worse, as there are many "happy" surgery stories)

best wishes

gerbo

[MATJESNIC]

Gerbo,
You are right on all counts. Thanks.

Melissa

[Celia]

I totally agree with Gerbo ! We've been through the infantile growth spurt with Deirdre and we've come out O.K. If I "believed" all the negative studies out there about progressive infantile scoliosis, I might as well just roll over and die

The study on PHV is quite depressing, however I would like to read the 'entire' study before throwing in the towel ! Another study I would like to read is the Spinecor study because it offers much hope (children with curves over 30 degrees were treated) and fared quite well ! Given a choice I would rather read stories of hope and triumph vs stories of doom and gloom. This is why I'm an eternal optimist....

[MATJESNIC]

Spinecor

Hi Everybody!
We got our bodysuits!!! They look really nice. Nicole didn't try them on yet. but I told her whatever it is, it is. I am not sending them back again. Now we have 8 from Spinecor and 4 from Special-Clothes. That should be plenty. Celia, that is great that you are an optimist. I am always trying to be optimistic, too. Have a nice day everyone.
Melissa

[Celia]

Gerbo,

Does Lisanna have her brace yet ? Is she not wearing any support right now ?

[gerbo]

no, no support at all currently, just telling her to keep on "side-shifting", a corrective movement, proposed by, of all people, ms mehta, and continuing with torsorotation at gym. I am not too worried as i am convinced that in a month or so a scoliosis will not get structurally significantly worse, i.e. no irreversible changes are likely to take place in such a short time, which could not be corrected by good bracing after (this is what you call "rationalising", well knowm psychological defence mechanism)

We just received on saturday a letter stating that we now can phone to make a NHS appointment, as we reached "top of the waiting list", i'll do that tomorrow as I can not keep on rationalising for much longer and want her back supported again asap

I am very remotely wondering whether daughter would get any benefir out of coming to see dr rivard and colleagues on top of the input we are getting by mr Mills. What really bothers me is that he had to use a computer to work out what components to use. Did dr rivard need to do that??

gerbo

[Celia]

Dr Rivard and Dr. Coillard were not referring to any manuals if that's what you mean They are the inventors of the brace, BUT we did have to have lateral and prone position x-ray in addition to the P/A, so I imagine the computer program had some kind of input in determining the proper fit for the brace. Are you considering seeing Dr. Rivard ? If so, Dr. Rivard and Dr. Coillard are the nicest, most down to earth doctors you'll ever meet ! What is side shifting ? Did you have a consultation with Miss Mehta ? Sorry for all the "?"

[gerbo]

One of the earliest articles I found re the use of exercises was the use of "sideshifting", as an additional treatment for scoliosis (http://www.ncbi.nlm.nih.gov/entrez/q...&dopt=Citation) This small study suggests that it might help (a bit??) Somewhere I picked up that it was originally advocated by Ms Mehta, when she worked at Stanmore in London. We have never seen or consulted her, although she must be a fascinating person to meet i would think.

We had little formal instruction, but the basic technique is to move the upper part of your body laterally to the concave side of the curve (so not bending it), thereby till some extend actively correcting it. It is basically a way of holding yourself straight and when performed properly the posture looks much better. Big problem is really to keep on doing it all the time, or having to remind somebody to do it all the time, so even if it works, the chance that you get a teenager to do this consistently isn't too big.

I do believe that the corrective movement isn't much different from the corrective movement achieved by the spinecor.

gerbo

[cyprusmom]

Yes, indeed this "side shifting" is one of the corrections one of the spinecor straps does to my daughters spine and when out of the brace one of the prescribed movements part of the corrective exercises. But it all depends on the individual case as different corrective exercises are needed for each person. And ofcourse it is all connected to the rest of the body so you have the pelvis, the shoulders, the thorax to correct as well......
But how much longer will Lisanna be unbraced?
Hope all goes well,
Pola

[gerbo]

But how much longer will she be unbraced?
Hope all goes well,
Pola

just been told will be getting an appointment next week friday, which is excellent for nhs standards

looking forward to it, but also dreading it, as she will be so reluctant to be braced again after tasting freedom for a month.

does it ever snow on cyprus?? (no relevance to this question at all, was just wondering about it yesterday)

gerbo

[Celia]

Very interesting info on side shifting ! I know I would be a nervous wreck if Deirdre had no support at all, it must be a very difficult time for you knowing she's probably in the middle of her PHV period at present. Could she not wear the boston brace during sleep, I don't see how that would influence muscle atrophy and that's when growth normally occurs.

On the topic of weather, we're having a very mild winter here in Ontario ! On Thursday we're expecting to get a high of 7 degrees celsius and currently all the snow has practically disappeared.

[gerbo]

I know I would be a nervous wreck if Deirdre had no support at all, it must be a very difficult time for you knowing she's probably in the middle of her PHV period at present. Could she not wear the boston brace during sleep, I don't see how that would influence muscle atrophy and that's when growth normally occurs.

Trying to make me nervous now? Her current TSLO (not boston) brace is a very poor fit now and is very unlikely to do any good. For the sake of another 10 days, I am not going to worry (note mixture of rationalisation and denial)

On the topic of weather, we're having a very mild winter here in Ontario ! On Thursday we're expecting to get a high of 7 degrees celsius and currently all the snow has practically disappeared.

so huskie-sledge rides have been cancelled then??

[gerbo]

it must be a very difficult time for you knowing she's probably in the middle of her PHV period at present.

I actually am getting some comfort out of the fact that despite a vulnarable age with considerable growth, and a poorly correcting brace, we have seen little if any deterioration over the last year, is our torsorotation working???

[Celia]

so huskie-sledge rides have been cancelled then??

Unfortunately, due to the extreme mild weather we suffered a major set back when our igloo collapsed on the alpha dog Oh well, better luck next year....

[gerbo]