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!
Margo, you may wish to read/take part in these discussions:
- I have acid reflux so bad it is coming up into my sinuses http://mayocl.in/2aLKaZm
- I am a relatively healthy person with a problem "bloated belly" http://mayocl.in/2biTqQF
- Barrett's esophagus, gastroesophageal reflux disease and acute gastritis http://mayocl.in/2aSjxzJ
I can imagine you're concerned about the damage risk reflux poses to your esophagus. What final tests do you have in September?
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.
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
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.
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?
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
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
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.
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.
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.
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.
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
I am very interested in this subject as I too suffer from it. But first, congrats to the new grandparent. And I am so sorry for what all of you are going thru. My swallowing problem started when I was a teenager. I am 75. At first it was just some kinds of meat but it gradually worsened. In my late 20's I had a few weeks when I could not eat at all. After neurological tests, the doctor said he didn't know, just hoped it didn't get worse. I have more trouble with liquids but food depends a lot on the texture. I have had my esophagus stretched many times but no help. They are now telling me I may eventually have to have a feeding tube. I also have acid reflux up into my ears and sinus. I cannot swallow pills at all, must be liquid or crushed. I have been advised to see a speech therapist but none of my doctors seem to want to do that. I guess I have survived all these years, hopefully, I can go a few more. But I am interested in learning more about the surgeries and new treatments.
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
I was diagnosed with complete achalasia in 2015. Prior to that, had a gastric blockage in '81, causing me to spend a month in the hospital. Everything was coming back up. Problem solved, but that constant aggravation caused my esophagus to start its slow deterioration. By 2006, I was down to 90 lbs, as my LES was closing up, and achalasia was setting in. Had the Heller myotomy, which literally saved my life, and put on 40 lbs. But I no longer have any motility. Foods need to be liquefied, mostly. I have had my esophagus dilated every two years, as it starts to close up again. At least my gag reflex is still working, when I accidentally eat too fast/too much. This pasta-loving girl is missing out on stuff so much! In private, I can eat almost anything, but need to spit it out. I can't get by without chewing something once in a while. Smoothies, soups and watery mashed potatoes are my staples now. I keep hoping for someone to perfect an esophageal transplant, but that may not happen in my lifetime. I empathize with you others who live with this condition. Bright side: I've lost pounds, and am maintaining at a good, healthy weight.
Have immersion blender, will travel!
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Welcome to Connect @margo42.
There are several members talking about reflux and gastroparesis in a variety of discussions throughout Connect. @rsinger22 @ladysky @dandl48 @robbinr @danielad @rexanna @rexanna @pinkmk will you join me in welcoming Margo and adding your thoughts and experiences?
Margo, you may wish to read/take part in these discussions:
- I have acid reflux so bad it is coming up into my sinuses http://mayocl.in/2aLKaZm
- I am a relatively healthy person with a problem "bloated belly" http://mayocl.in/2biTqQF
- Barrett's esophagus, gastroesophageal reflux disease and acute gastritis http://mayocl.in/2aSjxzJ
I can imagine you're concerned about the damage risk reflux poses to your esophagus. What final tests do you have in September?
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
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
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2 ReactionsHi @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.
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3 Reactions@jimhd Hi Jim, Keep us posted on your progress with the new therapist as well as with the the spinal cord stimulator. I'll be praying for you. Teresa
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1 Reaction@hopeful33250 and everyone else.
My granddaughter #2 was born 30 minutes ago! I'd share a picture if I knew how. Kaitlyn Rose is her name.
Jim
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2 Reactions@jimhd How wonderful, Jim. Congratulations to Kaitlyn Rose and the whole family! Teresa
Congratulations @jimhd, that is awesome news
I am very interested in this subject as I too suffer from it. But first, congrats to the new grandparent. And I am so sorry for what all of you are going thru. My swallowing problem started when I was a teenager. I am 75. At first it was just some kinds of meat but it gradually worsened. In my late 20's I had a few weeks when I could not eat at all. After neurological tests, the doctor said he didn't know, just hoped it didn't get worse. I have more trouble with liquids but food depends a lot on the texture. I have had my esophagus stretched many times but no help. They are now telling me I may eventually have to have a feeding tube. I also have acid reflux up into my ears and sinus. I cannot swallow pills at all, must be liquid or crushed. I have been advised to see a speech therapist but none of my doctors seem to want to do that. I guess I have survived all these years, hopefully, I can go a few more. But I am interested in learning more about the surgeries and new treatments.
I was diagnosed with complete achalasia in 2015. Prior to that, had a gastric blockage in '81, causing me to spend a month in the hospital. Everything was coming back up. Problem solved, but that constant aggravation caused my esophagus to start its slow deterioration. By 2006, I was down to 90 lbs, as my LES was closing up, and achalasia was setting in. Had the Heller myotomy, which literally saved my life, and put on 40 lbs. But I no longer have any motility. Foods need to be liquefied, mostly. I have had my esophagus dilated every two years, as it starts to close up again. At least my gag reflex is still working, when I accidentally eat too fast/too much. This pasta-loving girl is missing out on stuff so much! In private, I can eat almost anything, but need to spit it out. I can't get by without chewing something once in a while. Smoothies, soups and watery mashed potatoes are my staples now. I keep hoping for someone to perfect an esophageal transplant, but that may not happen in my lifetime. I empathize with you others who live with this condition. Bright side: I've lost pounds, and am maintaining at a good, healthy weight.
Have immersion blender, will travel!
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2 Reactions