Dysphagia is not specific to myositis; there are many reasons why someone might have trouble swallowing food or fluids. For the myositis patient, dysphagia is usually caused by weakness in the muscles of the throat. About 36% of all myositis patients can experience dysphagia.

While dysphagia can occur in all forms of myositis, it is most frequent in those with inclusion body myositis. Difficulty swallowing may be the first sign of IBM, especially for those whose symptoms progress very slowly over several years.

Dysphagia can lead to serious complications, including aspiration pneumonia caused by bits of food or fluid “going down the wrong pipe” and entering the lungs. Because eating and drinking are so difficult, patients may also suffer from inadequate nutrition or dehydration, and they may start to lose weight unintentionally.

Signs and symptoms

  • Coughing and choking when trying to swallow food
  • Liquids are harder to swallow
  • Choking when trying to swallow saliva
  • Frequent throat clearing
  • Wet vocal quality
  • Pain when swallowing
  • Eating more slowly
  • Sensation of food stuck in the throat or chest
  • Frequent heartburn
  • Coughing in the night

Diagnosis

An easy way for patients to identify dysphagia themselves is to drink a glass of water and then try to speak. If your voice sounds wet, there is a problem with the water getting trapped at the top of the esophagus near the vocal chords. Doctors might also examine your head, neck, and tongue, test the gag reflex, and get a chest x-ray to visualize the lungs.

Other diagnostic procedures may include:

Modified barium swallow or video fluoroscopy requires patients drink a contrast solution containing barium while a form of real-time x-ray called fluoroscopy is used. The barium, which shows up as white on x-rays, outlines the inside of the esophagus and allows a doctor or speech pathologist to see the entire swallowing process and find where the fluid is collecting.

Flexible endoscopy is a procedure in which a small flexible tube with a camera on the end is passed through the nose to the back of the throat and past the base of the tongue and larynx to look directly at these areas for potential problems.

Treatments

There are many different causes of dysphagia, and treatment is guided by the cause. It is important, therefore, for dysphagia to be fully evaluated by a speech pathologist to be sure that myositis is the actual cause. Depending on the cause, these are some treatments that can help with swallowing problems:

Modifications – Patients can be taught a number of simple strategies for manipulating food so it can be swallowed, including:

  • Choose food textures that are more easily swallowed
  • Alternate liquids and solids
  • Tuck the chin so the tongue moves out of the way and food can be swallowed

Esophageal dilation is a procedure that dilates or stretches the narrowed area of the esophagus. This is usually done under sedation or with a local anesthetic sprayed in the back of the throat to numb the area. Dilators of increasing size are inserted into the esophagus to stretch the opening. Unfortunately, the effects of this intervention are usually temporary.

Crycopharyngeal myotomy is a small incision made in the muscle fibers of the upper esophagus to widen the opening and allow food to pass through more easily.

Neuromuscular electrical stimulation involves using a low-level electric current to stimulate the throat muscles. It is used together with exercises that enhance swallowing. A speech pathologist must determine the area for placement and instruct the patient on exercises that must be done during stimulation.

Botulinum toxin (Botox) injection into the affected muscles of the throat has been used to treat dysphagia related to a variety of causes. Reports are mixed on how effective this is for dysphagia from myositis.

Feeding tube is a rubber tube inserted directly into your stomach, either through the mouth or nose (oral or nasogastric tube – usually for short-term only) or surgically inserted through the abdomen (gastrostomy tube into the stomach or upper intestine). This allows food to bypass the swallowing process altogether. Patients with feeding tubes can still eat normally but receive the majority of their nutritional needs through the tube.

It is important to remember that a feeding tube for myositis patients is not an end-of-life intervention. The goal of a feeding tube in this situation is to provide enough nutrition to keep the patient strong and healthy. Modern feeding tubes are easy to care for and are easily hidden. Physicians encourage patients to consider a feeding tube for supplemental nutrition anytime swallowing interferes with proper nutrition and weight maintenance.

Resources

Living with dysphagia and a feeding tube – video presentation by Dr. Todd  at the TMA Annual Patient Conference

The Dysphagia Cookbook by Elayne Achilles – available in the TMA store

The Oley Foundation is a support and resource organization for people living with home intravenous nutrition and tube feeding.