effect of scoliosis in later life

I am trying to find out what effect a residual curve will have in later life.

It was suggested when J was last cast that we might expect him to have a curve in the 20*s even after casting. He will be fitted for a brace after the series of casts he's currently having, but that will be just to maintain whatever he's got rather than correct it. It was not a consultant who said this though - so it is another question for the 10th October when we do get to see a consultant and have more x-rays.

I need to know whether or not to push for a different treatment - eg EDF (the Mehta cast treatment with proper traction applied while the child is on a frame, not just a squeeze on the soft cast).

I had hoped to go to the Oxford conference last week to get answers (see earlier post from the end of July). I may post separately about them saying at the last minute (after me contacting them, not them contacting me) that it was "deemed inappropriate for members of the public" and that "this meeting involves discussion by highly trained specialists from around the world on a very complex and demanding field".

My feelings on all of that and the email exchange are long enough to be worthy of a separate post! If you don't have information, it's hard to know what questions to ask - yet it is my responsibility as a parent to be proactive in J's treatment and push for a second opinion or alternative treatment. I may not be a consultant, but Cambridge don't have a bad reputation. Enough.

Returning to the effect in later life, I started this post with the intention of saying that I have found a website about backpain today which had a relevant query and consultant's response: http://www.backcare.org.uk/779-1655/Scoliosis.html 

In short, the adult who submitted the query because of intense backpain had had scoliosis as a child (before he was 11) and had been told it was cured. The consultant replied wondering what kind of scoliosis it was (congenital or idiopathic) and went on to write:

Either way, if the curve is not too bad then she could lead a normal life with little if any restriction. However in late middle age, when wear and tear changes set in and the repair mechanisms in the body become less vigorous, then pain may develop and the curvature may increase a little perhaps unbalancing the spine.

At that stage a good therapist is often helpful with massage, deep heat, specific exercises, manipulation, shoe raise, spinal support etc as appropriate. If still bad then a spinal or pain specialist may help. The first essential is to define as clearly as possible the source of the pain, which may be muscle, ligament, facet joint, disc or nerve root and treat accordingly with injections, radio-frequency etc.

Occasionally if all else fails, life is intolerable and the pain source can be determined with some confidence, then well directed surgery with stabilisation or relief of nerve pressure can be valuable.

Chronic pain management will help you to understand the nature of the pain and to live with it with some compromises but a minimum of disability. If you can become more active then the repair processes might be stimulated sufficiently to ease the pain."

The key sentence for me is: However in late middle age, when wear and tear changes set in and the repair mechanisms in the body become less vigorous, then pain may develop and the curvature may increase a little perhaps unbalancing the spine.

However "small" the residual curve, the unbalancing may produce pain in later life. They say that below 10* is normal and not deemed to be scoliosis. Ok. But 20*+? Even if it's not progressive at this stage (and they have indicated that they think it is of the resolving type, not the progressive type), it may not resolve to less than 10*. Would Mehta casting with EDF produce a better angle? Is it, in any case, worth getting the opinion of someone trained in the alternative method? (there is a consultant in Oxford who does this type of casting I have found out, plus the ones I knew about in Liverpool and Middlesex).

I would like to know what effect the growth spurt during puberty has on a residual curve too - if there's a weakness, then won't it exaggerate that? (that seems logical and is what other parents have been told by doctors on the message boards I'm on, but their children have progressive scoliosis that is being treated by Mehta (down to less than 10* in quite a few cases!), so I don't know whether it applies in J's case).  

I will be building up my questions for 10th October.