Home Speech-Language Pathology My Esophagus is Dead: Dealing With Achalasia

My Esophagus is Dead: Dealing With Achalasia

by Paul Imbert
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illustration of person regurgitating

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. pauli@twc.com

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Tammie October 25, 2016 - 6:15 pm

My dad had Botox injections in the esophagus which would help for 3-4 months at a time, he was elderly and. Not a surgical candidate.

Missy October 25, 2016 - 9:41 pm

Hey Paul! I too, as an SLP, have been dx with achalasia. It was so ironic to be on the other side of the barium X-rays. My surgeon said that the balloon dilation will not help and recommended trying Botox first but then eventually surgery. My symptoms triggered much panic as I thought I was dying of a heart attack! Now that I know what it is, I am managing and not panicking. I want to go to Mayo Clinic for a second opinion, but I really want to avoid another manometry. That was awful! Thanks for sharing your experience.

Paul Imbert October 26, 2016 - 5:12 pm

Sorry to hear that. The manometry was very clear and definitive in my case/in my diagnosis. No one had any doubts that I needed surgery after the manometry. Usually that is the flagship test for diagnosing achalasia. About a week before my surgery was scheduled at Roswell Park, my LES closed even more. I was then regurgitating about half of what I was eating. I was getting dehydrated and starting to lose weight. I had to go there to get hydrated and for an endoscopy for them to extract impacted food from the LES week before surgery, which complicated things. Clearing the food didn’t help much though. The LES had closed even more anyway. I still regurgitated half of what I ate after they cleared the impaction. Then I had the surgery and was immediately relieved. Not to be a wet blanket…but just a word of caution…If it is achalasia, it is likely to degenerate/get worse. It could happen very slowly or very rapidly. Mine took a real nosedive right before the surgery was scheduled. Not sure why.

Tammy October 25, 2016 - 9:53 pm

I am a speech therapist, I have achalasia diagnosed at 14 with a surgery but still many difficulties

Paul Imbert October 26, 2016 - 5:17 pm

Sorry to hear that. Do you think the surgery was done properly at the time? I have to eat more slowly with smaller bites and I can’t overeat or I will get heartburn for sure. The omeprazole helps (20 mg every 2 days in my case) but I am trying to stop taking it. Every time I go off it I get what they term, “rebound reflux” and the onset of wicked heartburn. It’s hard to get off the omeprazole. I can maintain my weight but get a feeling of fullness when I eat because the LES is wide open and reflux occurs (not necessarily acidic), making my meals less bountiful. It might be tough to gain weight if I had to.

Winelly Arvelo-Massari October 25, 2016 - 10:54 pm

Did you experience previous symptoms before the achalasia got to that point? If so, what symptoms were those? Thanks

Paul Imbert October 26, 2016 - 5:29 pm

Yes. I had minor-moderate bouts of regurgitation. That was the major symptom early on. Chugging the ice water was the last straw. I knew it wasn’t going away at that point. It was only after that I started to feel heartburn. Then the area at the level of the LES became very sore, with a pinching type of heartburn because at that point acid was damaging the esophagus there. Then came the coughing and some aspiration. I actually had a mild aspiration pneumonia at the time of surgery. It didn’t take much coughing to trigger the pneumonia. Even though omeprazole tamps down the heartburn symptoms these days, I still sleep with my bed on 3″ blocks at the headboard to discourage reflux.

Delanne Porter October 26, 2016 - 12:58 am

I can’t believe I am seeing my life written down by someone else. I was shrugged off and misdiagnosed with reflux & heartburn and testing showed i hadn’t suffered from either. I was told i always “thought” something was wrong and i was imagining things. I’m awe right now. Thank you for sharing your story. I find comfort in knowing I’m not alone.

Madison Bennink October 29, 2016 - 5:00 pm

Really informative article. Thank you for sharing your story!

Andrea November 1, 2016 - 2:54 am

Thank you for sharing your story. I found it very interesting and informative. Best of luck in your future health.

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