Patient Comments: Achalasia - Describe Your Experience

Please describe your experience with achalasia.

Comment from: cforester, 45-54 Female (Patient) Published: March 19

I have had all the classic symptoms of achalasia for three years. I have lost 50 lbs in those 3 years. I have been through clinic for every test under the sun on stomach, pancreas, gallbladder, liver, including EGD, HIDA scan, Upper gastrointestinal, CT Scan, even an ERCP because I had a Roux-En-Y gastric bypass in 2004. My symptoms did not start till 2011 and are still present. It wasn"t until recently that I discovered this disorder, from a TV show and I about flipped out when I listened to these symptoms. No one has ever suggested that I have this problem, but every single symptom on here, I have. I now live in Nashville TN and have seen a gastrointestinal specialist who was supposed to be very reputable, for three months. He did the EGD which he said was normal. He was led to believe that my issue was stress induced. Well, if it wasn"t stress reduced at the initial onset, I"m convinced it is worsened by stress after not being able to eat for three years. He referred me to another gastrointestinal specialist and I have been waiting three months to get in to him, my appointment is on 3/25/14. I am so frustrated.

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Comment from: Seeker, 65-74 Male (Patient) Published: February 04

There are about 70,000 achalasia victims worldwide and someone must have an answer other than surgery. I was diagnosed 5 years ago at 61, confirmed with a barium swallow (EGD), endoscopy and manometry and suffer all of the generic symptoms. The GI's only solution was a Heller myotomy. I've been relatively successful in suppressing most attacks with careful diet, multiple small meals followed with a carbonated caffeine-free beverage (e.g. ginger ale) with every meal, avoid chocolate, alcohol and several types of spices (e.g. rosemary). I had a remarkable experience last month. I flew to Las Vegas and spent 3 weeks there (from my 15 year home in Denver). For the duration of the visit I had no symptoms. I ate and drank normally without any problems that usually plagued me with the disorder. When I returned to Denver last week, some the symptoms have returned; but, I'm still able to eat and drink with fewer acute issues. And, I'm at a complete loss as to the reasons for the abatement; altitude, climate, water, gambling whatever happened to me may be the answer to curing this anomaly.

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Comment from: Charlie, 65-74 Female (Patient) Published: January 13

I have had difficulty swallowing for about 4 years. At first it was rice and chicken, a favorite of this family. I didn't realize the food was stuck until the water I drank came back up. It was very distressing, but didn't happen too often. The last 6 months it has happened with more foods. I have found that if I drink tap water with meals it is much better than ice water. I try to alternate foods so that salad, vegetables and fruit help difficult things go down. The best thing I have found is warm/hot liquids - coffee, tea, soup or water. I was diagnosed last week. My husband does not want me to have surgery. I go back to see the doctor on January 21 to discuss the options. Reflux has been part of my life for maybe 30 years.

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Comment from: mohammad, 35-44 Male (Patient) Published: January 08

I suffered from achalasia for more than two years. At first I was not diagnosed correctly and I took the wrong treatment for about 3 months. Then I started to lose a lot of weight. After that I decided to go to a specialized hospital where I was diagnosed of having achalasia and the best choice for me was Heller myotomy and fundoplication. Anyway, I am much better now but I still suffer when I have dinner. I only gained 10 kg after 8 months of the surgery. Before the surgery I lost more than 25 kg. I am much better than before, I can eat and swallow now but I am not feeling well especially with some kinds of drinks and food.

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Comment from: Quarlinda, 25-34 Female (Patient) Published: December 04

I was 25 when I was first diagnosed with achalasia. It began with difficulty swallowing and progressed to migraine headaches. My initial doctors knew right away what was happening in my esophagus and said I would be a good candidate for a Heller Myotomy with a fundoplication wrap which is a surgery to slice the sphincter muscle and wrap it around my stomach so that the sphincter remains open to allow the passage of food. While the surgery is costly, the effects are phenominal. I was a good candidate for the Heller Myotomy with fundoplication wrap because of my age, health, and active lifestyle. After three years of passing out, loosing considerable amounts of weight (down from 120 to 80 pounds and very unhealthy) and awful migraines, a gastroenterologist began with a Botox treatment that allowed me to last for two weeks. (I was too far gone for balloon dilation.) Then, I had the surgery. This surgery saved my life. I am a certified teacher, a mother, and a survivor of achalasia. While I still have the achalasia, I can now swallow and digest food because my sphincter is permanently open. I have a whole new respect for food and healthy living!

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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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