March 31, 2004

ON MDA’S NEW HEEL CORD SURGERY VIDEO

MDA has produced a 39-minute video titled “Standing and Walking Are Gifts: A Guide to Heel Cord Tenotomy."

This in-depth but easy-to-follow video provides an overview of the surgical procedure often recommended for prolonging walking in boys affected by Duchenne muscular dystrophy (DMD). It takes parents through every step, from initial considerations of the advisability of the surgery to post-operative concerns such as the procedure for fitting braces.

If you’re registered with MDA, you can obtain a viewing copy by contacting your local MDA office.

The video is narrated by Irwin Siegel, co-director of the MDA clinic at Rush University Medical Center in Chicago.

Siegel is an orthopedic surgeon whose involvement with MDA dates back to 1961. His interest in tendon releases and bracing to prolong walking in children with muscular dystrophy extends back more than three decades. Siegel’s warm, compassionate delivery makes this video a comfortable viewing experience for parents of boys with DMD.

Because of contractures (tightening of tendons) that occur in the heel cord, also called the Achilles tendon, boys with DMD often adopt a toe-walking posture as a compensatory way of maintaining balance to keep walking.

	For 30 years, orthopedist and MDA clinic director Irwin Siegel has been concerned with prolonging walking in boys with Duchenne MD through the procedure known as heel cord surgery.

This may work for a while, but if the contracture gets too severe, walking becomes impossible and the boy must use a wheelchair.

Heel cord tenotomy, which involves cutting the heel cord tendons, is performed to allow braces to be fitted so that the individual can remain standing and walking longer.

While some experts feel a child with DMD, rather than undergoing surgery to keep walking, might benefit more from graduating to the use of a motorized wheelchair with the ease and mobility that such a device affords, Siegel remains convinced that the psychological and physiological benefits of maintaining walking as long as possible are enormous for the affected individual and for caregivers as well.

“There is going to be a cure for this disease, but until victory is accomplished, ‘V’ stands for ‘Vertical,’” he says.

Siegel says results for children who’ve undergone the procedure have been encouraging. “We found that on average a patient will stay upright, either walking or at least standing, for an average of two to four years beyond the time they would normally be using a wheelchair,” he says.

The video shows actual footage of heel cord tenotomy being performed on a DMD patient at Rush University Medical Center.

We also see footage of a cast being applied post-surgery and of the subsequent brace-fitting process, with helpful commentary from certified orthotist Gene Bernardoni, who consults regularly at a number of MDA-sponsored clinics in the Chicago area.

In addition, Wallace Nogami of the Department of Anesthesiology at the University of Arizona in Tucson, who specializes in helping children with debilitating diseases, discusses the risks associated with using anesthesia in youngsters with DMD.

The video also includes remarks by family members of children who have undergone heel cord tenotomy.

“In the muscular dystrophy family, we see great courage evidenced,” says Siegel. “This is a constant source of inspiration to me.”

“Standing and Walking Are Gifts: A Guide to Heel Cord Tenotomy" was created by MDA as part of our ongoing effort to provide information to help families to be full participants in the medical decisions they make in collaboration with medical professionals.

Another medical video available for viewing by those served by MDA is “Breathe Easy,” which educates families on ventilatory options in dealing with neuromuscular diseases.

For immediate access to other informative MDA videos, you may wish to explore the video materials available on MDA’s three public Web sites, including our ALS site, our Spanish-language site and our main site. MDA’s online videos provide a wealth of information on subjects from MDA research to summer camp.

In addition to videos, medical and research information is provided to families served by MDA through brochures and other publications such as Quest and The MDA ALS Newsletter, e-mail alerts and thousands of pages of content on our Web sites. Quest published an article on heel cord surgery in 2001.

MDA feels that empowering families through clear, authoritative medical information is indispensable to making life better for those fighting the muscular dystrophies and related disorders.

With every best wish...

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