Patient Comments: Achalasia - Describe Your Experience

Please describe your experience with achalasia.

Comment from: There is hope, 65-74 Female (Patient) Published: May 30

I am a 70 year old female. I was diagnosed with achalasia when I was 19 years old. After a year of symptoms, losing weight and finally not even being able to swallow water, I had the Heller procedure. I could swallow a lot better after this, but still had a degree of difficulty. Years later I started getting dilation, which helped a little. I was having this done every 3 months. My doctor finally told me in 2011 that he could no longer do the dilatation, I was at the end stage of my disease. My doctor referred me to a surgeon. I had esophagectomy surgery, where they remove most of your esophagus and part of your stomach is removed and then the stomach is moved up to your chest cavity and reattached to a very short remaining esophagus. It was a long recovery (probably because of my age, 67 at the time. I can happily report that now I finally can swallow like a normal person. No one can appreciate this more than an achalasia sufferer. There is hope at the end of this tunnel. Good luck to all of you who endure this problem every day.

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Comment from: Greg, 35-44 Male (Patient) Published: May 21

I had achalasia for several years and was misdiagnosed by my primary care doctor for having esophageal spasms, based on barium swallow tests. It progressed to the point where I could not sleep, because I had to sit up and constantly cough to keep from drowning on saliva. I went to the emergency room (ER), had more swallow tests, and an endoscopy. I had a Heller myotomy about 2 years ago, and I haven"t had any problems. I asked about the fundoplication, because I was worried about acid reflux after everything was opened up, but my surgeon advised against it. He said he has had to go in and undo some of these, and I would not have any problem with reflux. He was right. I have not had any symptoms at all. Before, when I thought I had heartburn, it was actually food digesting in my esophagus and trickling into my stomach through a 1mm hole. My doctors were all outstanding. There was another surgeon who wanted to do a less invasive surgery with a shorter recovery time, but I found out that he could not make the incisions as good. I chose the better procedure. Also, I can eat whatever I want, but with meat, I cut it a little smaller and chew it a little more now.

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Comment from: Herina, 45-54 Female (Patient) Published: April 14

I started having difficulties swallowing when I was 19 years. No one had any idea what was wrong with me and I was given medication for sore throat; antibiotics, you name it! The last straw was when a doctor suggested I was suffering from heart break. I lost so much weight (at my worst I was 48 kg and am 5 ft. 6 inches tall) as I could barely keep anything down, even water without vomiting, and I would be starving most of the time. I figured if the problem was not physical then it had to be mental as some doctors had convinced me that it was all in my mind! After a visit to a psychiatrist, he sent me for a barium swallow and the radiologist asked me how long I had had the problem. I cried tears of joy because finally I was not a mental case, it was achalasia! I proceeded and had surgery to open it up physically and it was very successful and that was 20 years ago. To date all is well. I suffer occasionally from heart burn but if I keep away from spices, I am okay. I am thankful for this healing and hope that no one has to wait like I did for 10 years to get help.

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Comment from: KATHY, 45-54 Female (Patient) Published: April 11

In the year 2001 I started having bad problems eating and drinking and vomiting everything. I went to doctor after doctor, no one knew. I had test after test, I had laparoscopic Heller myotomy with part Nissen fundoplication, and two years later I had an esophagogastroduodenoscopy. It kept getting worse, never better. Six months later I had a thoracoscopic esophageal myotomy on my right side. They told me I had achalasia and lost all my motility in my esophagus, so four years ago I had to have my whole esophagus removed, even my sphincter muscles, my stomach brought up in my chest and half my stomach made into a tube attached to my throat. I have never drank or smoked, or did drugs, it is a lot of challenges every day. I take a lot of medications but not one doctor can tell me how you lose all motility, they only say it is a muscle dysfunction of the esophagus. It has changed my life so much some days I eat, some I don't. I weigh 101lbs and never go over. So please stay on top of your symptoms, because it might be alright one week and turn just like that. I only wish a doctor could answer my questions; they just tell me I am one in a million to have all of mine removed. But as I said it's challenging every day.

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Comment from: manju, 19-24 Female (Patient) Published: March 21

I really don't know when this symptoms started. I was a medical student when I started to experience the symptoms. I suffered a lot, I was not able to drink water also. Every day I had vomiting and wheezing also every morning and I had severe heartburn. Finally I underwent barium swallow and manometry and was diagnosed with achalasia cardia; it was a painful moment in my life. Afterwards I underwent endoscopy with balloon dilatation twice but it was failure. Then I underwent cardiomyotomy. Afterwards I was on liquid diet for 3 months; now 4 years are over. I can swallow everything slowly, but after surgery also I didn't gain any weight.

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Achalasia - Causes Question: What was the cause of your achalasia?
Achalasia - Symptoms Question: What symptoms did you experience with your achalasia?
Achalasia - Treatment Question: What treatment was effective for your achalasia?

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