Achalasia

Posted by ladawki143 @ladawki143, Jul 7, 2011

Anyone else with achalasia from Mayo? I’m heading up to Rochester soon for surgery.

Liked by lee28

@margo42

I am 46 and I was diagnosed with acalasia of the esophagus in 1992 (at age 22) and underwent an esophageal myotomy and Nissan fundal plication. I have seen some of the best doctors (I have been told) at northwestern in Chicago, mayo in Rochester and most recently in the twin cities. I continue to have reflux and wake up every night with pain. Strangely- the only thing that helps is eating. Most acid blockers have not helped. I have been on omeprazole with mixed results. I also am often extremely bloated by the end of the day- or wake up bloated when I have “chest” or esophagus pain at night. I may have mild gastroparesis but have no stomach pain. I am very, very concerned about the damage the reflux is doing to my esophagus. I have started going through the usual battery of tests again and have my final two in sept. before I meet with my doctor again. Anyone else experience anything like this? Thank you!

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I also read on the internet that apple cider vinegar is very good as well but can have a few side effects eventually. Unfortunately, you do have to be consistent and follow a good diet as well. You know nothing spicey. Its a tough diet to follow. Good Luck

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@margo42

I am 46 and I was diagnosed with acalasia of the esophagus in 1992 (at age 22) and underwent an esophageal myotomy and Nissan fundal plication. I have seen some of the best doctors (I have been told) at northwestern in Chicago, mayo in Rochester and most recently in the twin cities. I continue to have reflux and wake up every night with pain. Strangely- the only thing that helps is eating. Most acid blockers have not helped. I have been on omeprazole with mixed results. I also am often extremely bloated by the end of the day- or wake up bloated when I have “chest” or esophagus pain at night. I may have mild gastroparesis but have no stomach pain. I am very, very concerned about the damage the reflux is doing to my esophagus. I have started going through the usual battery of tests again and have my final two in sept. before I meet with my doctor again. Anyone else experience anything like this? Thank you!

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I also wanted to thank dandi 48. I had a endoscopy last year and of course had it done in the ENT’s office (didn’t like that) and didn’t care for him either. Everything was fine then. This year I just had a colonoscopy, everything fine there, but the doctor was a gastro doctor and said he would take care of me for the acid reflux so am going to make an appointment with him and am going to have him do the endoscopy. Thanks

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@margo42

I am 46 and I was diagnosed with acalasia of the esophagus in 1992 (at age 22) and underwent an esophageal myotomy and Nissan fundal plication. I have seen some of the best doctors (I have been told) at northwestern in Chicago, mayo in Rochester and most recently in the twin cities. I continue to have reflux and wake up every night with pain. Strangely- the only thing that helps is eating. Most acid blockers have not helped. I have been on omeprazole with mixed results. I also am often extremely bloated by the end of the day- or wake up bloated when I have “chest” or esophagus pain at night. I may have mild gastroparesis but have no stomach pain. I am very, very concerned about the damage the reflux is doing to my esophagus. I have started going through the usual battery of tests again and have my final two in sept. before I meet with my doctor again. Anyone else experience anything like this? Thank you!

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Hi @etsy, my alcalasia has gotten worse. I am afraid it could turn into esophagus cancer. I am schedule for a colonoscopy this November, I will discuss with my GI doctor about. Endoscopy also. Thanks for the replay.

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@apportee

Hi @etsy, my alcalasia has gotten worse. I am afraid it could turn into esophagus cancer. I am schedule for a colonoscopy this November, I will discuss with my GI doctor about. Endoscopy also. Thanks for the replay.

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I have this also and losing my voice a way to control reflux is lemon water it brings the acid down lemon is high pH alkaline stops the acid erosion my brother RIP and sister have had esophagus reflux also. When I sip lemon water my voice gets stronger squeeze a half of lemon in a glass or bottle of water! Don’t forget to take pits out! I might have read it on here?

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@etsy

I am 69 and was diagnosed with acid reflux two 1/2 years ago; severe enough to be on 40 mg twice a day of a proton inhibitor and have tried several. On the internet one day I researched this and found that acid reflux could be the result of your stomach acids are not equalized. Something as simple as a glass of lemon water or two could do the trick; the alkaline acid in lemons neutralizes the stomach acid It did for me.. I had a 16 year old dog which I had to have put down and discovered while I had her, I had severe allergies with lots of post nasal drip (which also can cause acid reflux), didn’t think it could be her. After having her put down, my allergies are not nearly as bad and all I take now for prevention is 1 20 mg. of Pepcid AC in the am and lemon water when I need it. Am completely off of those proton inhibitors. Good Luck

Elsie Crean

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Your statement — “the alkaline acid in lemons neutralizes the stomach acid” — has caught my attention, for it defeats science. If it works, are there explainable reasons behind it? Just would like to know since I too have an imbalanced pH.

Liked by grammydove

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@amoll157

45 year old male. Had 2 heller myotomy surgery and I need another one. My lower LES is closing again. This sickness is breaking me down slowly. Life has change from happy to pain and struggling to eat anything. Been to ER 3 times to remove steak. Than rice now bread. I’ve tried everything. Had 3 dialations

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Hello @amoll157,

I’m sorry you are going through so much, but I’m so glad you’ve found the Connect community. Here is some detailed information about Achalasia, and treatment from Mayo Clinic: http://mayocl.in/2kVYpyf

You may also be interested in connecting with other members in this discussion:
Achalasia of esophagus with reflux: http://mayocl.in/2cfhyny

I’m also tagging past members @dhuffman @ladawki143 @lee28 @sfrigon @klsxoxo @tammyjean @tgirl, with the hope they return with more insight for you.

@amoll157, what foods can you eat comfortably? Has your doctor ever suggested a fundoplication or (according to Mayo Clinic), a newer procedure, called peroral endoscopic myotomy (POEM)?

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@kanaazpereira

Hello @amoll157,

I’m sorry you are going through so much, but I’m so glad you’ve found the Connect community. Here is some detailed information about Achalasia, and treatment from Mayo Clinic: http://mayocl.in/2kVYpyf

You may also be interested in connecting with other members in this discussion:
Achalasia of esophagus with reflux: http://mayocl.in/2cfhyny

I’m also tagging past members @dhuffman @ladawki143 @lee28 @sfrigon @klsxoxo @tammyjean @tgirl, with the hope they return with more insight for you.

@amoll157, what foods can you eat comfortably? Has your doctor ever suggested a fundoplication or (according to Mayo Clinic), a newer procedure, called peroral endoscopic myotomy (POEM)?

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Wow thank you so much for responding. I was beginning to feel all alone in this misery.  Yes my first procedure was myotomy with partial fundoication.  (However you spell it). That was horrible. I was burping every 20 min for over a year. Than I had 3 separate dialations. Than surgery 2 was heller myotomy and remove the partial fundo. Now I had 3 endoscopy to remove food log in my LOWER LES. dr said I need another heller myotomy. You mention a new procedure. I’m definitely going to look into it.  They said I need surgery ASAP    

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@kanaazpereira

Hello @amoll157,

I’m sorry you are going through so much, but I’m so glad you’ve found the Connect community. Here is some detailed information about Achalasia, and treatment from Mayo Clinic: http://mayocl.in/2kVYpyf

You may also be interested in connecting with other members in this discussion:
Achalasia of esophagus with reflux: http://mayocl.in/2cfhyny

I’m also tagging past members @dhuffman @ladawki143 @lee28 @sfrigon @klsxoxo @tammyjean @tgirl, with the hope they return with more insight for you.

@amoll157, what foods can you eat comfortably? Has your doctor ever suggested a fundoplication or (according to Mayo Clinic), a newer procedure, called peroral endoscopic myotomy (POEM)?

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I went through the same struggle. Everything deteriorated until I could not risk eating without the possibility of aspiration pneumonia. Had a
PEG tube ( feeding tube ) surgically implanted
last week at the Mayo Rochester. So far things are going OK. GOOD LUCK

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@kanaazpereira

Hello @amoll157,

I’m sorry you are going through so much, but I’m so glad you’ve found the Connect community. Here is some detailed information about Achalasia, and treatment from Mayo Clinic: http://mayocl.in/2kVYpyf

You may also be interested in connecting with other members in this discussion:
Achalasia of esophagus with reflux: http://mayocl.in/2cfhyny

I’m also tagging past members @dhuffman @ladawki143 @lee28 @sfrigon @klsxoxo @tammyjean @tgirl, with the hope they return with more insight for you.

@amoll157, what foods can you eat comfortably? Has your doctor ever suggested a fundoplication or (according to Mayo Clinic), a newer procedure, called peroral endoscopic myotomy (POEM)?

Jump to this post

Wow. I’m so sorry. My surgeon told me I had to remove everything too. I’m scared to go that route but I know it’s only a matter of time. It’s badly deteriorated. How was your procedure and was it painful. Please tell me all about when u have time. Your the first person I know who has gone thru what I go thru.

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@kanaazpereira

Hello @amoll157,

I’m sorry you are going through so much, but I’m so glad you’ve found the Connect community. Here is some detailed information about Achalasia, and treatment from Mayo Clinic: http://mayocl.in/2kVYpyf

You may also be interested in connecting with other members in this discussion:
Achalasia of esophagus with reflux: http://mayocl.in/2cfhyny

I’m also tagging past members @dhuffman @ladawki143 @lee28 @sfrigon @klsxoxo @tammyjean @tgirl, with the hope they return with more insight for you.

@amoll157, what foods can you eat comfortably? Has your doctor ever suggested a fundoplication or (according to Mayo Clinic), a newer procedure, called peroral endoscopic myotomy (POEM)?

Jump to this post

I have to eat cereal and farina and soft food as mash potatoes. I can eat meat but must chew 20 times before the first swallow. Takes about 30 min to eat a small meal. Lots and lots of fluid. My surgeon told me in time I must remove my whole esophagus because it’s already badly damaged. I’m the main supporter for my family so I can’t stop working. I just don’t know what to do at times. At night sometimes I must sleep sitting up. My les is open all the time. If I lay down flat it creeps up my throat. Horrible feeling. But worst it the spasm in my esophagus. Extremely painful and nothing to stop it. Just have to let it pass. What is the new procedure. POEM

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@kanaazpereira

Hello @amoll157,

I’m sorry you are going through so much, but I’m so glad you’ve found the Connect community. Here is some detailed information about Achalasia, and treatment from Mayo Clinic: http://mayocl.in/2kVYpyf

You may also be interested in connecting with other members in this discussion:
Achalasia of esophagus with reflux: http://mayocl.in/2cfhyny

I’m also tagging past members @dhuffman @ladawki143 @lee28 @sfrigon @klsxoxo @tammyjean @tgirl, with the hope they return with more insight for you.

@amoll157, what foods can you eat comfortably? Has your doctor ever suggested a fundoplication or (according to Mayo Clinic), a newer procedure, called peroral endoscopic myotomy (POEM)?

Jump to this post

Hello @fjg827,

Welcome to connect. Thank you so much for sharing some of your history; we’re glad to know that you have been able to find some relief. If I may ask, when were you diagnosed with achalasia? Do you have any other suggestions/advice for @amoll157 and other members who have this condition?

@amoll157, here’s what I found on POEM from Mayo Clinic: Peroral endoscopic myotomy (POEM) is surgery with no outer incision, and is available for treating achalasia at Mayo Clinic. In this technique, doctors use instruments attached to a lighted, video-equipped tube (endoscope) passed through the mouth and esophagus to make an internal incision in the muscular valve at the lower end of the esophagus. The POEM procedure doesn’t require an incision through the abdomen.

I did find some very encouraging clinical updates for achalasia on the Mayo Clinic website; you can read details here: http://mayocl.in/2kxB8lG

And, (I know it’s a lot of reading!), I would sincerely encourage you to see this discussion on Connect, as well:
“I have acid reflux so bad it is coming up into my sinuses”: http://mayocl.in/2aLKaZm

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@kanaazpereira

Hello @amoll157,

I’m sorry you are going through so much, but I’m so glad you’ve found the Connect community. Here is some detailed information about Achalasia, and treatment from Mayo Clinic: http://mayocl.in/2kVYpyf

You may also be interested in connecting with other members in this discussion:
Achalasia of esophagus with reflux: http://mayocl.in/2cfhyny

I’m also tagging past members @dhuffman @ladawki143 @lee28 @sfrigon @klsxoxo @tammyjean @tgirl, with the hope they return with more insight for you.

@amoll157, what foods can you eat comfortably? Has your doctor ever suggested a fundoplication or (according to Mayo Clinic), a newer procedure, called peroral endoscopic myotomy (POEM)?

Jump to this post

I was diagnosed in 2010. I couldn’t eat for 3 weeks. My lower les closed up completely. It took 3 months for 1 Dr to figure out I had achalasia All other Dr said I had a food sickness and 1 said I had marijuana syndrome. Lol they were all wrong. The Dr from costa Rico said he seen it in his country. Than it all made sense to me. I’ve been very slim all my life. Since young I would choke on food. Everyone would tell me I’m eating too fast or not chewing well. I choked several times a day on foods. At age 35 it got worse till it completely closed shut. I was on Iv for 3 weeks NPO. NO water no food. I can never gain weight. I eat like I weigh 200 lbs but I’m only 134. I use to be 155 until it completely close and I drop to 120. Dr said I also have a eating disorder. I eat small meals every 2 hrs. It’s horrible. Every few months I get INflammatory bowel syndrome. I will throw up for days and diareah for days. Once the hospital puts me NPO fir days till my intestines calm down. Achalasia a Latin word meaning for not resting. Well same thing happens to my intestines. Two horrible problems but I feel they are related. My surgeon is Dr Eugene Banks here in Orlando Florida. Great Dr and person.

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@kanaazpereira

Hello @amoll157,

I’m sorry you are going through so much, but I’m so glad you’ve found the Connect community. Here is some detailed information about Achalasia, and treatment from Mayo Clinic: http://mayocl.in/2kVYpyf

You may also be interested in connecting with other members in this discussion:
Achalasia of esophagus with reflux: http://mayocl.in/2cfhyny

I’m also tagging past members @dhuffman @ladawki143 @lee28 @sfrigon @klsxoxo @tammyjean @tgirl, with the hope they return with more insight for you.

@amoll157, what foods can you eat comfortably? Has your doctor ever suggested a fundoplication or (according to Mayo Clinic), a newer procedure, called peroral endoscopic myotomy (POEM)?

Jump to this post

The procedure is done as an outpatient.
In and out the same day. No bad pain.
Sore for about a week where the incision
is. Everyday the feeding routine becomes easier. You start feeling better right away. Reflux has stopped completely. Good knowing that you are getting the right nutrition.

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@amoll157

45 year old male. Had 2 heller myotomy surgery and I need another one. My lower LES is closing again. This sickness is breaking me down slowly. Life has change from happy to pain and struggling to eat anything. Been to ER 3 times to remove steak. Than rice now bread. I’ve tried everything. Had 3 dialations

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Hi, I’m over 86 and am told no surgery. Eating was always an enjoyable time … no longer. I can get food into stomach by turning head extreme left to swallow food or liquid. Sounds easy enough. But I have to chew on left, move food to center, get ready to swallow, turn head near shoulder LEFT and turn right back to close the sphinter muscle. Over and over again. Doc suggested I eat alone, not with hubby, no tv, no distractions …. even then my mind wanders ….. but it must not. Who wants to eat like that? Hubby is into 9th year of Alzheimer’s and I’m his caretaker. So …. I try.

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@bilobabe

Hi, I’m over 86 and am told no surgery. Eating was always an enjoyable time … no longer. I can get food into stomach by turning head extreme left to swallow food or liquid. Sounds easy enough. But I have to chew on left, move food to center, get ready to swallow, turn head near shoulder LEFT and turn right back to close the sphinter muscle. Over and over again. Doc suggested I eat alone, not with hubby, no tv, no distractions …. even then my mind wanders ….. but it must not. Who wants to eat like that? Hubby is into 9th year of Alzheimer’s and I’m his caretaker. So …. I try.

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Hi @bilobabe,
Welcome to this discussion forum about achalasia. @amoll157 certainly will understand your situation. She too has to be very concentrated when she eats, chewing 20 times and taking up to 30 minutes for even a small meal. Recently @fjg827 had a PEG (feeding) tube surgically implanted. I hope they will return to share their experiences with you.

Bilobabe, what reasons did your doctor give you about why surgery isn’t an option in your case?

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