Share this:
amoll157
@amoll157

Posts: 5
Joined: Feb 02, 2017

Achalasia

Posted by @amoll157, Feb 2, 2017

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

REPLY

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)?

@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 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    

@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 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

@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.

@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

@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

@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.

@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.

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.

@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.

Jump to this post

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?

@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.

Jump to this post

My age is the reason.  I’m over 86.

@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.

Jump to this post

What a complicated ordeal, @bilobabe. I don’t really know what the problem is with my swallowing. I have to be careful to hold my breath when I drink, or I spend some time coughing. The rings or waves in my throat that are supposed to move consecutively to propel the food downward to the stomach move at random instead. I have to do a lot of chewing, and I always toast bread. Sometimes trying to get food unstuck, I will drink, but that doesn’t always help. Lately, even water will take time to swallow. My sister and several cousins have MS, and dysphagia is one of bunch of things that are problems for me that are symptoms of MS. I don’t know if my doctor has done anything to get me in to see the one neurologist in our area who does MS diagnosis, and it takes several months to get an appointment. The same thing happened to me recently, waiting 3 months to see the one pain psychologist who assesses people to qualify for a spinal cord stimulator. I’m finally scheduled to do a trial implant in April. It’s for the burning nerve pain of idiopathic peripheral neuropathy. I would hope that if I were 86, they wouldn’t tell me I’m too old. I’m 66. If I were 86, I might be looking for another doctor who didn’t view me as an old person. I pray that you’ll find relief from your eating issues soon.

Jim

@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.

Jump to this post

Jim …. Sorry about the LONG wait to get help. My doc recently told ME to find a doc who can help me. Swallowing pills has been a big problem. A couple days ago I began eating and would swallow a pill between bites when eating was going okay. It seemed to help. From items I’ve read your age shouldn’t be a problem …. just find out somehow WHAT’s the 1,2,3 problem. I know you are trying.
Nanc

@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.

Jump to this post

@bilobabe

I was very healthy all of my first 50 years. Then I started showing a mixture of symptoms. I went to my pcp, and told him that what I was going through could indicate depression. Just in case, he started me on an antidepressant, then began looking for organic issues. I think the first thing we found was sleep apnea, which is when I started using a CPAP machine, and felt way better. Then, I found that my gall bladder wasn’t working, and had it removed. I don’t remember the chronology, but 45″ of my small intestine quit working and had to be resected, 80% of my colon became impacted – the doctor said it was like concrete, and within days or hours of tearing. Then I had peptic ulcers, then later had to have surgery to repair scar tissue from the previous surgeries. Then I started feeling pins and needles in my feet and legs, which gradually became more and more painful, and burning. In the middle of all of this, I became deeply depressed and suicidal. A psychiatrist informed me that I have major depressive disorder, PTSD, anxiety disorder, panic attacks and depressive bipolar disorder. The mental health issues became significant in 2015, and I’ve been seeing therapists most of the time since. I just went 18 months without any counseling, and I was deteriorating mentally the past several months. I finally decided to try the spinal cord stimulator, after trying all of the meds for neuropathy without success. I know that the increasing pain was worsening the depression. I saw the pain psychologist last week, and he was pretty concerned with my condition. The trouble with him is that he’s an hour away, but a new therapist is starting locally next week, and I was at the top of the list for scheduling. Yay! I meet him Monday at 10am. He may just save my life. We live in Oregon, but my wife flew out to New Hampshire this week, to be with our daughter, who’s having her first baby at the beginning of next week. Our son has a 4 year old daughter, so now we’ll have 2.

I could tell you the rest of my life story, but enough is enough! I’m glad to meet you, Nanc. I have a sister Nancy, who just moved to Tennessee, in the foothills of the Appalachia. Is it the Appalachia, or something else?

Jim

Hi @amoll157, @jimhd, @bilobabe, @fjg827,

You might be interested in this very recent update from Mayo Clinic about a procedure know as POET (Peroral endoscopic tumor resection), which has been been shown to achieve very successful outcomes in the treatment of esophageal motility disorders such as Achalasia. You can read about it here:
http://mayocl.in/2mxsMJ7

Hope you find this helpful.

Please login or register to post a reply.