Inclusion Body Myositis – Dysphagia, or Difficulty Swallowing

The Significance of Dysphagia in IBM

Inclusion body myositis patients with dysphagia, or swallowing difficulties, can suffer from poor nutrition as well as choking. Aspiration occurs when food or liquid enters the airway, potentially causing pneumonia. Dysphagia may also promote social isolation, since many of our personal interactions are centered around meals.

The Mechanics of Normal Swallowing

The mechanics of swallowing are complicated, and are explained in this video:

Family and Friends Should Know How to Assist in a Choking Emergency

If you have dysphagia, everyone you live with should know how to help if you choke. They should learn the recommended ways to assist in a choking emergency.

Mayo Clinic advise regarding choking first aid

How is Swallowing Evaluated?

Swallowing is evaluated by speech therapists who have expertise in swallowing.

A VideoFluoroscopic Swallowing Study (VFSS), also called a modified barium swallow, may be ordered. The patient swallows a substance called barium that blocks x-rays. During swallowing, x-rays allows the throat to be seen on a video monitor, and the passage of barium from the mouth down into the stomach is observed.

A Fiberoptic Endoscopic Evaluation of Swallowing (FEES) is done by inserting a camera-equipped tube through the nose into the throat so that swallowing can be viewed.

Causes of Dysphagia in Inclusion Body Myositis

Cricopharyngeus muscle dysfunction is often responsible for swallowing difficulties. The cricopharngeus muscle, located in the upper throat, is also known as the upper esophageal sphincter. It relaxes during normal swallowing, opening up the esophagus so food can pass. Cricophyngeus problems in IBM are often due to stiffness of the muscle, probably because of inflammation and scarring.

Treatment of Dysphagia in IBM

Swallowing is sometimes easier in certain head positions, such as the chin-down position.

It may become necessary to restrict the diet to certain types of food, and eventually to pureed foods. Surprisingly, thin liquids like water may be more difficult to swallow than thicker liquids. Special thickening agents can be added to liquids to make swallowing easier.

Swallowing exercises are sometimes prescribed to try to strengthen the swallowing muscles.

Balloon dilation is the standard treatment for narrowing of the esophagus due to cricopharyngeal dysfunction. In this procedure a special deflated balloon is passed into the esophagus, the swallowing tube in the throat. The balloon is then inflated, expanding and stretching the esophagus. Although the results are usually temporary, and the procedure may need to be repeated, the procedure is very helpful for many people.

Severe cases can be treated with a surgical procedure, a cricopharyngeal myotomy, which involves cutting the muscle so it can relax.

Feeding Tubes

If trouble swallowing is causing malnutrition, weight loss, or frequent choking, a feeding tube may help. A tube can be placed directly through the abdominal wall into the stomach using a procedure called percutaneous endoscopic gastrostomy (PEG). Food can then be delivered directly to the stomach through the tube. Some people with feeding tubes will still want to chew and swallow some of their food, with supplemental nutrition delivered through the tube, while others will receive all of their nutrition through the tube. Feeding tubes not only make it possible to receive adequate nutrition, but they can relieve mealtime stress and decrease the risk of aspiration pneumonia (caused by food and fluids entering the lungs).

by Kevin Dooley, MD
Revised July 6, 2023