The Rett Syndrome Association of Ireland

What is Scoliosis?

Scoliosis is a curve of the spine – usually sideways – that makes the spine look more like an “S” or “C” than a straight “I”. The bones of the spine rotate so that one shoulder or hip looks higher than the other. In most cases, the cause of Scoliosis is not known.

Scoliosis is not uncommon in the general population and many people have a small variation along their spines. Typically, Scoliosis is not diagnosed until a curve reaches 15 degrees or more and intervention is not considered until the curve reaches approx. 50 degrees.

Scoliosis is common in girls with Rett Syndrome, but by no means inevitable. However, girls with Rett should be checked regularly for it. A simple visual check can rule it out and an X-Ray can be used to confirm occurrence if it is suspected. Checking for Scoliosis should be part of any routine medical check up or review.

In an of itself, a mild Scoliosis is not necessarily serious. The impact is often more cosmetic than medically dangerous. However as a curve progresses the possibility of complications increases. As the spine is vital for posture if the curve develops it will affect the person’s ability to walk and sit. In more serious cases, where the curve is passing 70 degrees the chance of more serious medical issues arise – the curve can put pressure on the lungs and other internal organs, preventing them from functioning correctly and this is dangerous and should be taken seriously.

Treatment

Treatment for scoliosis depends on the severity of the condition.

In Mild Cases there is not treatment required, just monitoring to see if the condition progresses.

Bracing is sometimes used for moderate curves, but this is now uncommon in Ireland

Serious curvature requires surgical intervention. This is a significant surgery, especially for people with Rett Syndrome, where other complications may be present.

What does surgery do?

The goal of surgery will be to stop the curve progressing. It may help to reverse the effects of the curve, but may not in all cases. In Surgery rods are inserted and fixed to the spine to hold it in place. These prevent the curve from progressing. Then over time the bones of the spine grow around the rods and fuse together.

It’s difficult to generalise because everything depends on the severity of the curve, the location of the curve and any other complications presented in the individual patient, but Spinal Surgery is often a long, multi-hour operation. Rett Girls may spend some time in Intensive Care afterwards as a matter of routine precaution. Assuming no other complicating issues, the stay in hospital might be around 10 days or so.

It is worth noting that some Physiotherapists believe that Scoliosis can be treated by Physiotherapy alone. However, medical teams point out that there is little evidence to show that this or other complimentary treatments will either reduce or increase the degree of curvature on a consistent basis. This is not to say that there is no benefit from these efforts. But there is no conclusive research to show that these will solve the problem.

U.S. National Library of Medicine on Scoliosis:

General Information about Scoliosis:

Mayo Clinic on Scoliosis:

American Scoliosis Foundation:

This article is published here for information purposes only. Medical advice should be sought from a Medical Professional.