My Esophagus is Dead: Dealing With Achalasia

I first discovered a problem in my esophagus during an intense workout a few years ago. As I chugged ice water, the liquid rolled halfway down my throat and then abruptly returned to the floor in front of me. I’d been experiencing minor regurgitation problems, but this made me realize the seriousness of my issue. I scheduled an appointment with a gastroenterologist (GI).

As a speech-language pathologist who often works with dysphagia patients, I find my diagnosis of achalasia ironic. Achalasia destroys the motor nerves in the esophagus. The  lower esophageal sphincter fails to open properly to allow the bolus to pass into the stomach comfortably, often leading to regurgitation. This autoimmune disease also reduces peristalsis. Symptoms include coughing, regurgitation, heartburn and a feeling of a golf ball getting stuck in the throat. These often lead to weight loss or difficulty maintaining weight.

I witnessed my father going through these same symptoms, although his achalasia occurred much later in life than mine. Mine began at age 53. Having achalasia can feel isolating—it reportedly affects only one in 100,000 people. I often wonder if I’m the only SLP with this disorder.

After a misdiagnosis of reflux, I was treated with balloon dilation (twice) and omeprazole. I kept trying to explain that my symptoms seemed like more than reflux. Finally, the GI did a Bravo PH acid test that revealed zero acid in the esophagus, ruling out acid reflux. The barium esophagram then clearly revealed the achalasia. Watching the visual imaging of my dysfunctional organ with destroyed motor nerves made me feel like a part of me had died.

An esophageal manometry—an uncomfortable test involving swallowing repeatedly with a nasal tube down the throat—followed the barium esophagram to confirm the diagnosis. Manometry confirmed my need for surgery. I had an idea it was achalasia months earlier, but had to wait for the health care system to catch up. Now I understand—after surgery—that my esophagus can still act as a “drain” for food without the peristalsis. Thank God for gravity. My swallow is relatively functional again.

As an SLP you might save a patient time and suffering if you know the signs of achalasia. Some of these include regularly regurgitating food or feeling a tickle in the throat. I also suspect achalasia when co-workers mention a patient who keeps vomiting. Heartburn usually stems from reflux, but might also be a sign of achalasia.

If a patient does have achalasia and dilation of the esophagus doesn’t help, different types of surgery exist. I chose laparoscopic heller myotomy with fundoplication, where they cut away the lower esophageal sphincter to “open the drain” to the stomach and perform a small wrap of the top of the stomach to reduce the side effect of acid reflux, which would otherwise have an unfettered path back up the esophagus. I was not in pain afterward, but recovery included frequent intense heartburn and disturbing stomach problems.

Part of my struggle involved not understanding what was happening. Finally understanding helped me realize my entire body wasn’t degenerating and my issue will most likely remain localized to the esophagus. In 2014, The ASHA Leader highlighted a study from Nature Genetics shedding more light on achalasia’s underlying cause. Researchers found esophageal nerve cells become damaged due to miscued immune responses after an earlier viral infection, which I think is exactly what happened to me. They believe it also involves a genetic predisposition, which jibes with my case, as my father had achalasia. Other sources also cite the immune system as a contributor to achalasia.

I can eat almost anything now, but with minor adjustments and annoyances—heartburn flares and coughing from reflux, for example. The omeprazole helps, but I’d like to wean off eventually. In general, the surgery successfully normalized my swallowing ability. Being an SLP who has worked with dysphagia my entire career helped me to gain an understanding of the situation as it developed. My professional experiences and watching my father suffer from achalasia, I feel, helped me prepare to handle this disorder. I hope understanding the signs will allow other SLPs to better help their patients as well.

Paul Imbert, MA, CCC-SLP, works in health care settings and treats many types of patients. He has more than 21 years of experience as a health care-based SLP. [email protected]