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Scoliosis in Myotubular Myopathy

Introduction to Scoliosis in Myotubular Myopathy
Working with an orthotist to fit a back brace.
The Decision on Scoliosis Surgery.
Internet information on scoliosis.
Quacks want to make a buck at your expense! Watch out.

Introduction to Scoliosis in Myotubular Myopathy

As children with myotubular myopathy grow, Scoliosis (or spinal curvature) begins to be a problem -- especially among the kids that are more severely affected. . If unmanaged, this can become a life-threatening problem. For most kids, Scoliosis begins to become noticeable around 5 to 7 years of age. However, we have talked with some families where Scoliosis became a problem much earlier, even as early as two years of age.

Based on our experience and our observations, evaluation and tracking of these kids by a physical medicine or orthopedic surgeon should begin at an early age. Often, the scoliosis will progress slowly until a 'growth spurt" or some other event and then it progresses rapidly. (For example, one child went from 37 degrees to 53 degrees of curvature in a six-month period. The child was eight years old at the time.)

Working with an orthotist to fit a back brace.

The traditional response to treating scolisosis at such a young age is through the fitting of a back brace. (Surgery is usually an option of last resort, if an option at all, for pre-adolescents.) One thing we have found is that these kids, who typically have compromised respiratory systems to begin with, have much greater difficulty breathing while wearing a back brace. When fitting and constructing the brace it is essential that the orthotist (the person who constructs things like back braces) recognize this fact and have a plan to compensate for the need to minimize the restriction on the child's ability to breathe. If the orthotist is unwilling or unable to do this, consider getting another opinion.

In two cases, an orthotist has tried an unconventional approach to bracing these children. It has worked well in one child; in the other child, it was not successful.. This was a customized solution to fit a customized application and may not be appropriate in all cases. If this may be of value to you, please contact us and we can help you help your orthotist or medical professional learn about this approach.

The Decision on Scoliosis Surgery.

The decision on whether or not to pursue surgery for scoliosis correction in Myotubular Myopathy is a difficult one.  There are a number of factors that must be weighed including,

• the rate of progression of the curve,
• the impact on respiratory efficiency,
• tolerance to bracing,
• the age of the patient,
• the physical condition and the ability of prosper after (or even survive) the surgery.

These factors lead to tough questions for which there are no easy answers. We are in contact with several families that have had scoliosis surgery and with several more that are contemplating it.  All would be interested in your experiences, thoughts and concerns, so please contact us.  Before making any decisions on scoliosis surgery, we recommend an informed, frank conversation with your orthopedic surgeon and the other doctors familiar with the patient.  Make sure the doctors talk to each other!

Much more information on this is available from the Links below and from the MDA (USA) "Ask the Experts" series on myotubular myopathy discussion group.

Internet Information on scoliosis.

There are many good resources for learning about scoliosis on the internet.  Here is one of the best...

The Scoliosis Mailing List The homepage of this internet mailing list has lots and lots of good information. A great place to start.

Which leads us to....

(The following text has been blatantly lifted from the scoliosis mailing list. It is good advice when it comes to scoliosis and good advice when it comes to medical treatment in general.)

"Quacks want to make a buck at your expense! Watch out."

"Because the main widely accepted treatment options - bracing and surgery - are unpleasant, because there are many unknowns about the condition, and because it often involves children, sufferers are particularly vulnerable to being misled by ineffective "therapies". Peddlers of these bogus treatments make their sale by telling people what they want to hear (e.g., this treatment method can correct curves, without surgery, one hundred percent naturally blah blah) -- rather than "the truth" as demonstrated by published, peer-reviewed double blind clinical research. Furthermore, people who have been conned into bogus treatments will often vehemently and irrationally defend their choice -- not surprising, given the fact that they've bought in to these treatments for their suffering child: would you want to admit being conned?

If someone tries to sell you a treatment -- the response is simple: Where's The Beef? The beef, of course, is a peer-reviewed double-blind published clinical study demonstrating that the treatment works. Ask for the research study. If there's no research, then the method is EXPERIMENTAL and UNPROVEN. Keep those adjectives in your mind when you get the sales pitch that's offered as an alternative to the research. And if the person selling you the treatment isn't using those adjectives -- they are trying to CON you. "

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