"In my opinion, the only way we’re going to develop really effective treatments will be to treat the cause of the disease, not the symptoms. The symptoms are late; the symptoms are at the end of the train of events. We want to get on the train at the very beginning."
Noel R. Rose, M.D., Ph.D.
Updated on this page only: 7/24/2018
It was April 1986. I had just competed in my second bodybuilding contest, the A.A.U. Collegiate Mr. America. I won my height class. We went out to my favorite pizza place in Chicago, Giordano's Deep Dish Pizza! It was strange, I was only able to eat one slice...
Two years later I found myself choking on an orange slice. Lucky for me, my girlfriend at the time knew the Heimlich maneuver. She insisted that I follow-up and get a proper examination. The doctor ordered a barium swallow and I was given the news. You have Achalasia. Acha- what? I hurried to my medical textbooks and looked up Achalasia: "Achalasia is a disorder of the esophagus that prevents normal swallowing."
At the time, my father was the Director of Labor Relations for the NYC Health and Hospitals Corporation.That meant he could find out who the best of the best was for this disease. I was referred to Stanley Cohen, M.D. of Temple University, fondly known at the time as "Dr. Esophagus." Dr. Cohen recommended a dilation and that is what I had done.
I was followed the next 15 years by a prominent gastroenterologist at Georgetown University Hospital, Stanley Benjamin, M.D. He performed several EGDs (endoscopies), but never did a barium swallow. I do not know why not, but I never asked. I was able to practice chiropractic full time and compete in powerlifting (and even won my age group with a 580 lb deadlift at age 40). But, by the early 2000s my swallowing difficulties increased dramatically. I started having to sleep with a wedge on most nights. I didn't realize that I was aspirating almost every night. I was not sleeping well and I felt it. At around 40 I was put on PPIs by my new gastroenterologist. A few years later I read about the mineral deficiencies caused by PPIs. I discussed this with him and he "poo-pooed" it. I got off PPIs and have never returned.
In 2002, I got married. My wife was and is a huge supporter. Unfortunately, by 2006, my difficulty swallowing increased to the point that I knew “something” had to be done. I went from sleeping on a wedge to sleeping in a Zero Gravity Chair several night a week or starting in bed and then moving to the chair when I was awakened by the aspirations/coughing.
I hopped on pubmed.gov (the National Library of Medicine's repository for indexed medical papers) and started my research into my options. I decided on the University of Washington’s Swallowing Center and later that year had a Heller myotomy.
The fundoplication part of the surgery was not performed because of how tortuous my esophagus was. The Heller myotomy was not a success. My experience at U of W was not a good one as the surgeon thought quite highly of himself and was not helpful at all post-surgery. In addition, I (my wife and my brother) strongly requested that I be kept elevated (like on a wedge) on the surgical table to prevent me from aspirating during the surgery. He did NOT comply and I aspirated during surgery. I did request IV Vitamin C in recovery which was done. The chief resident mocked me for it.
I recovered from the surgery quickly (IV Vitamin C works!) as I have always been in excellent physical condition and had a pretty clean diet (good enough for recovery, not good enough for every day life - I'll explain later). The difficulty swallowing returned after six months and my symptoms worsened over the next few years. I had to sleep in a zero gravity chair every night so I did not aspirate. I never slept completely through the night because of both the fullness and the fact that I needed to drink so much water to swallow that I was getting up multiple times to void.
I felt more than “full” all the time and leaning over patients was not comfortable. During this time period, I was the owner/director of a successful sports chiropractic practice with multiple offices. In 2007, we adopted our son from birth (our first and only child). Age 47 with an infant - I just simply forged ahead with life.
The day before my birthday in 2009 I had the first bout of atrial fibrillation. Scary! My esophagus was huge on chest X-ray. I was electrically cardioverted, shocked with pads and all. Unfortunately, it would not be the only time. This recurred every few months.
After another exhaustive search on pubmed.gov, I spent the next year determining my next move and consulted with a group of renowned surgeons: Tom Rice, MD, Marco Patti, MD, and James Luketich, MD and spoke with Mark Orringer, MD. Unfortunately, all agreed that I need an esophagectomy. I then had to decide who would be the surgeon. This decision was complicated by the fact that each had a different surgical approach! Which was best, a transhiatal approach with a cervical anastamosis or an Ivor Lewis thoracic approach with a thoracic anastamosis. Oh my!
I ultimately decided on Dr. Luketich because of his thoracoscopic approach and number of surgeries he performed with good outcomes. The esophagectomy with a pyloroplasty was performed in 2010. The surgery was eight hours because Dr. Luketich found plastic clips left by the surgeon who performed the Heller myotomy in 2006 (as if I did not have enough difficulties swallowing already!).
During the months before surgery I consulted with many top nutritional experts: physicians, chiropractors, and PhDs. I ran basic blood work (I did not fully understand functional blood chemistry testing at the time and did not find a "functional medicine doc" until after surgery). I wish I knew about this years before. This is SO important! My vitamin D levels were low (32) and I supplemented to get them to 75 before surgery.
I also trained very hard for the surgery as I was 50 at the time and I wanted to be in the best shape possible. I was able to row on an ergometer for 70 minutes hard, lift heavy weights, and swing kettlebells at high intensity. My body was ready! I am very glad it was because the surgery was eight hours with a fair amount of blood loss because of the tedious job of removing those plastic clips.
I arranged to have IV Vitamin C as I was being wheeled into surgery and every day I was in the hospital (25 g/day IV). I also arranged with the Integrative Medicine Center at University of Pittsburgh Medical Center (UPMC) to have acupuncture in the hospital. The acupuncturist was thrilled because he had never treated a post-surgical patient in the hospital. You see, the Integrative Medicine Center was not at all integrated into the UPMC hospital system. The nurses thought I was crazy doing all this - IV Vitamin C and acupuncture. I was up and walking as soon as I got out of the ICU and was out of the hospital in five days. I was supposed to be hospitalized for a minimum of 10 days.
As instructed, I stayed in a hotel next to the hospital the next 10 days. This was to make sure I was close by because there is always a possibility of something called an "anastomotic leak" - a leak from the "new" esophagus. I was walking 30 minutes a day by the day 10. I had one dilation three weeks after the surgery. I was off all pain meds within one month. I needed 3 dilations at two week intervals about 1 year after surgery and I had another dilation in June 2014 which was three and one half years post surgery.
I returned to part-time work in seven weeks (way too soon) and was functioning pretty well. I gradually got back into training even though I was told that I should never "lift heavy" again. Thankfully, my professional knowledge of rehab paid off. All of us esophagectomy folks have been sliced and diced, so physical rehab is paramount. Breaking up all the scar tissue is so important and reinforcing that with the proper corrective exercise makes all the difference. I was able to perform one pull up one month post surgery. I took 22 months and was able to return to a competitive deadlift of 475 lbs at 172 lbs body weight.
Every year since surgery I perform a complete panel of functional blood work which keeps me on track. I been even stricter about my foods and liquids (water and 1 cup of bulletproof coffee each morning) and take the supplements which work for me. I ran both ALCAT testing and the full Spectracell micronutrient testing series and discovered my deficiencies.
Almost all my food was organic (still is!). No wheat, no grains, no dairy. Only grass fed meats (lots of chewing) and lots of veggies (I had to grind them to a pulp in a food processor before surgery in order to be able to swallow them), moderate amounts of fruit in the summer.
I continue to do amazingly well. I completed the rigorous RKC kettlebell certification in 2014 and the Progressive Calisthenics certification in 2015. I even returned to full blown competition and won the Men's Masters Division of the Tactical Strength Challenge - TWICE!
I have learned a tremendous amount about functional nutrition since 2010 and have applied it quite successfully to improve my own health. I wish I knew 30 years ago, what I know now about functional medicine/health/nutrition. I strongly believe I would not have had to have the esophagectomy and if I got started when I was first diagnosed, maybe not even the Heller myotomy.
I want you to think about something as you read this book. Do any of the conventional medical treatments – all the drugs, procedures and surgical options – address the root cause of Achalasia? NOPE (see Dr. Boeckxstaen’s quote)!
So, why did I write Living With Achalasia?
This is personal! I know that I must take care of myself the best that I can for the rest of my life because none of the treatments I had ever addressed the foundational issues of what went wrong in my body (and mind). Everything I write about in this book can be integrated alongside conventional medical care.
I do not want people to suffer and I certainly would not wish an esophagectomy on anyone. My goal is to share with you what I have learned from my trial and error experiments on myself, from other health care professionals, and from fellow Achalasians. I am learning all the time. What has been frustrating is that there is no one source for us to consult, to use as a starting point. It is my hope that this becomes that source. This book will forever be a work in progress. Please join our Facebook Group (only for "Achalasians"). By sharing our experiences we can improve outcomes. Let’s learn together!
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