Distended belly with FSHD:  A surgical reconstruction

…and perhaps refinements yet to be discovered.  A first step.

by Rick Whitehead, Knoxville, Tennessee

I promoted using a double compression abdominal belt for years but was always looking for another solution. At age 66 I decided that I needed to find a surgeon willing, and hopefully covered by insurance, before it was too late. I calculated that I had a 15-year window to reap the benefits.

After many years of looking, I was lucky enough to finally find a new local surgeon who understood the issue. This surgeon is young, involved in research and teaches a variety of surgeries, including abdominal reconstruction.

I am happy to report that my surgeon was creative and used an approach to provide “an internal girdle of sorts.” It was successful, and he removed 15-plus centimeters of excess skin in the process.

Here’s the idea. As the core abdominal muscles were completely diseased, the surgery brings together the side external obliques over the abdominal area and secures them with mesh.

I was very curious about what my abdominal muscles looked like. My surgeon told me the healthy muscles are red and robust and the diseased muscles appeared greyish yellow and were diminished in volume. I was very happy to learn that there was no fat at all.

When I saw my FSHD neurologist after the surgery, he said (in his understated way) “this could be shared.” His caveat was that he couldn’t guarantee that the external obliques wouldn’t eventually become diseased too.

The outcome

My surgeon was concerned about how the intestines would respond to this new tightness. However, my years of using belts during waking hours conditioned the area to this restraint. I have had no adverse reactions to the “internal girdle”.

The surgeon was excited at the possibility that I would regain core strength. Thus far, this seems to be the case. Some distension has returned, but I haven’t given up on trying to build the external obliques to their maximum efficiency in their new role.

People who don’t understand FSHD have criticized the use of abdominal support belts, claiming that the muscles will weaken through disuse. Well, that might be true for a person with healthy muscles, but it’s different for us because these muscles are diseased. Now that I have some healthy muscles for my abdomen, I am not wearing the belts (even if they make me look more trim) as I believe my external obliques need constant use to stay healthy and strong.

Insurance coverage

This is not a cosmetic surgery, but is often dismissed as such, both by clinicians and insurance. In fact, this procedure will improve a health condition, restoring core strength, preventing frequent injuries, lessening lordosis, and reducing the debilitating fatigue.

My surgeon felt strongly that insurance should cover the operation, and my Humana Medicare in Tennessee agreed to do so. The operation itself is not that complicated, he said, but the mesh material is very expensive.

There is no name for this surgery, but “abdominal reconstruction” is useful terminology when filing an insurance claim. My surgeon’s office referred to the surgery as a “hernia surgery” for lack of a better term.

Future directions

There are a lot more details to this story, but I hope this brief description might help some of us with this belly distension, which causes a variety of ills, both physical and emotional.

A major question for future research is what if people with FSHD have this procedure done at a much younger age, when the distension first becomes evident? I think of the younger people who have “pregnancy bellies” and “beer bellies” and whether they would benefit from similar procedures.

This is not a tummy tuck. I don’t know how many others with FSHD have had this type of procedure, and I’m very happy to have had this opportunity to share my story.  Perhaps others will share similar experiences and help advance the best options for handling our distended bellies until a cure is discovered.