Patient Comments: Achalasia - Describe Your Experience

Please describe your experience with achalasia.

Comment from: Butterfly, 45-54 Female (Patient) Published: February 02

I have had my esophagus stretched three times now and felt some temporary relief from achalasia. I have lost weight quickly and it sometimes feels like fluid is going in my lungs at night, this is a very scary and painfully exhausting problem. My doctor just keeps telling me there is scar tissue in my esophagus. I noticed the problem developing after a neck injury from a car accident 5 years ago but it was never proven related. I am sorry for everyone that suffers with this problem I would not wish it on my worst enemy.

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Comment from: bobby$m, 55-64 Male (Patient) Published: January 20

I was first diagnosed with achalasia when I was 29. It did not take long for me to be diagnosed (about 2 months) after the normal tests. I had a bougie and two dilatations without any success. I lived with the situation for 7 years losing a bunch of weight. I was able to push the food down with tons of water. I also found that walking around helped sometimes. I also took Procardia to help relax the sphincter muscle that helped some of the time. I found that a cocktail or two before dinner also helped (when I did drink). In 1992 I woke up with chest pain one morning. I went to my doctor who ordered a chest x-ray. My esophagus was totally expanded. I was referred to a new gastroenterologist who told me to use the Procardia under my tongue. That gave me relief. He performed a dilatation that helped me for 23 years. I gained a bunch of weight (too much actually). I have had recent problems. He tried the botulism therapy, but it did not work. It has been getting worse and I had a new bunch of tests. I now have stage 4 achalasia and they are going to do a Heller myotomy. They may have to do an esophagectomy. Don't wait to do the myotomy. It could help to avoid my situation. I thought everything was okay, but my esophagus was expanding without me knowing. I find that room temperature water helps, carbonated liquids help (like club soda) at night.

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Comment from: Steve, 55-64 Male (Patient) Published: January 12

I started having swallowing problems about five years ago, mostly pain and pressure in the chest. I was initially diagnosed with GERD, but went to a different doctor and was properly diagnosed with achalasia. I had the Botox and had immediate improvement. As you know, however, that treatment is only temporary. I had a myotomy in May, 2013, and the results have been fantastic. My weight went from 98 to 128. No issues really. I am very happy I had it. I had the VATS (video-assisted thoracoscopic surgery) procedure and spent three days in the hospital and a few weeks to fully recover. I went back to work in a week. Have the surgery, it is well worth it.

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Comment from: jan scoatt, 65-74 (Patient) Published: December 30

I have suffered from achalasia since I was a small child although I was not diagnosed until I was in my 40s. By then so much damage had been done that it was hard to control my symptoms. I had the dilation by balloon and it split my esophagus and I spent 4 weeks in the hospital. After that it was just treating the symptoms. Three years ago, I had the Heller surgery. It was really bad and my recovery time was horrible but after that I felt so much better for about a year. Now we are back to square one. I know I am at the end stage of my disease as well. I am currently 88 pounds and also have COPD. This disease is horrible and if not caught early can make your life miserable and eventually end it. I wish good luck to all of you who are contending with it.

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Comment from: Jess, 19-24 Female (Patient) Published: December 17

I recently had surgery for achalasia after having to go through several medical examinations during a period of 2 years. I had the POEM procedure (per-oral endoscopic myotomy) and recovered quickly, I could eat solid food the day after surgery. I am extremely happy with the results although my chest pains I suffered from previous to the surgery have gotten worse. I'm not sure what can be done to help the pain. Other than that I sleep without problems unlike before, when I had to sleep with several pillows under my head in order to not wake up because I needed to cough up the saliva running in my throat. Further I have no problem with refluxes or similar.

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Comment from: Maz1953, 55-64 Female (Patient) Published: November 26

I was diagnosed with achalasia 31 years ago. I was also treated with operation to bypass my gullet. This helped a great deal but I have to say by no means did my symptoms disappear. I learnt to live with it and learnt how to cope. Stress definitely brings it on. Also some foods aggravate it, usually over indulgence of treats like cream and chocolate. After all these years I have realized tea is one of the worst offenders. The operation definitely was a great improvement on my life. I would advise anyone to go for it but don't expect a full cure.

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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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