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.
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.
20 years ago I had a laproscopic heller myotomy with a wrap . Now I go 3-4 days where I cannot eat or drink again....had recent test. shows complete absence of any peristalsis and narrowing of gastric cardia of esophagus. thorasic surgeon wants to undo wrap??thoughts?? or redo myotomy? thoughts? thank you.
@leeross123 , Sorry I am so long getting to this post. I have never had a Heller myotomy. I had a Nissen Fundoplication wrap in 2001 done by a local surgeon. The wrap partial failured soon after. Before the surgery I had GERDs, had an ulcer (caused by Helicobacter pylori) and trouble swallowing. Here is short version of my story which is too long for here: http://zarogasnook.blogspot.com/2015/08/a-long-time-passing.html .. no advertisements on my blog. I was referred to Mayo Clinic in 2013, by a different local surgeon who told me no one here was capable of doing the surgery I needed.. None of my swallowing test.. or motility test have been good.. results worse each time it seems. I have a spasm when I swallow at the back of my throat and then the food or liquid just drops down to right above my stomach (no squeezing happens to move it along) where another spasm happens. Food or liquid may enter my stomach or it may just back up into my esophagus. It may come all the way back up or just sit there. So far the dilations have helped with the swallowing. I eat small meals of soft, cooked vegetables and tender meats. I also have gastroparesis.. so far my stomach is just slow to empty. I eat lower fiber diet because of it. Usually a walk or stomach massage will get things moving. Sometimes if painful I use a moist heating pad. For the moment the Achalasia is dealt with by dilation.. which I had done July 2017. The one before that was in 2015. I also have Barrett's esophagus... so not sure what is down the road for me.
Zaroga
20 years ago I had a laproscopic heller myotomy with a wrap . Now I go 3-4 days where I cannot eat or drink again....had recent test. shows complete absence of any peristalsis and narrowing of gastric cardia of esophagus. thorasic surgeon wants to undo wrap??thoughts?? or redo myotomy? thoughts? thank you.
20 years ago I had a laproscopic heller myotomy with a wrap . Now I go 3-4 days where I cannot eat or drink again....had recent test. shows complete absence of any peristalsis and narrowing of gastric cardia of esophagus. thorasic surgeon wants to undo wrap??thoughts?? or redo myotomy? thoughts? thank you.
20 years ago I had a laproscopic heller myotomy with a wrap . Now I go 3-4 days where I cannot eat or drink again....had recent test. shows complete absence of any peristalsis and narrowing of gastric cardia of esophagus. thorasic surgeon wants to undo wrap??thoughts?? or redo myotomy? thoughts? thank you.
Hello @leeross123 and welcome to Mayo Connect. I am sorry to hear of the problems you are having 20 years after your previous treatment. We have many members who have talked about Achalasia and the treatments that they have tried. I'd like to introduce you to some of these Members. I hope they will post and let you know about their experiences, @evgenimat@fourof5zs. Here also is information about Dr. Stephen Cassivi at Mayo, who does surgery for disorders like yours. You might find this information helpful, https://connect.mayoclinic.org/newsfeed-post/meet-dr-stephen-cassivi/.
Have you considered a second opinion regarding this problem?
Hello @tamad and welcome to Mayo Clinic Connect. I so appreciate your sharing something that has helped you to deal with Achalasia, Often it takes a lot of investigation on the patient's part in order to find some workable solutions and it looks like you have found just that! I commend you for advocating for yourself and seeking out some treatment.
If you are comfortable sharing more about this disorder, could you explain how long you have had this problem? How was it diagnosed? Did you use any other medicines? What other treatments, surgeries, etc. did you try before you realized that the sips of cold water would help?
Hi Teresa, I was diagnosed with achalasia about 4 years ago using manometry tests following rapid weight loss and frequent vomiting during and after meals. Given my age at the time (73), my surgeon advised against surgical procedures. Instead I have had botox injections into my LES sphincter muscle every 6 months to keep the muscle open enough for the food to go down into my stomach. I have not had any bad side effects like acid reflux after the procedures. Nonetheless, I have sporadically experienced the usual symptoms of achalasia, like chest pain and sphincter muscle pain. Fortunately, early on I discovered that drinking a few sips of cold water instantly stopped the pain. My gastro doc was not aware of this simple solution ... at least in my case.
Hi Teresa, I was diagnosed with achalasia about 4 years ago using manometry tests following rapid weight loss and frequent vomiting during and after meals. Given my age at the time (73), my surgeon advised against surgical procedures. Instead I have had botox injections into my LES sphincter muscle every 6 months to keep the muscle open enough for the food to go down into my stomach. I have not had any bad side effects like acid reflux after the procedures. Nonetheless, I have sporadically experienced the usual symptoms of achalasia, like chest pain and sphincter muscle pain. Fortunately, early on I discovered that drinking a few sips of cold water instantly stopped the pain. My gastro doc was not aware of this simple solution ... at least in my case.
I do appreciate this information, @tamad. If we have any new members with this disorder would you mind if I invite you to their conversation? Many people could use encouragement and ideas for dealing with difficult symptoms!
Have any of you had colonoscopy with achalasia. Wondered how drinking the prep went down. Wondered if there were a special prep for
those with achalasia. Doesn't seem to be much info about this.
Connect
Connect
Like
Helpful
Hug
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
-
Like -
Helpful -
Hug
2 Reactions@leeross123 , Sorry I am so long getting to this post. I have never had a Heller myotomy. I had a Nissen Fundoplication wrap in 2001 done by a local surgeon. The wrap partial failured soon after. Before the surgery I had GERDs, had an ulcer (caused by Helicobacter pylori) and trouble swallowing. Here is short version of my story which is too long for here: http://zarogasnook.blogspot.com/2015/08/a-long-time-passing.html .. no advertisements on my blog. I was referred to Mayo Clinic in 2013, by a different local surgeon who told me no one here was capable of doing the surgery I needed.. None of my swallowing test.. or motility test have been good.. results worse each time it seems. I have a spasm when I swallow at the back of my throat and then the food or liquid just drops down to right above my stomach (no squeezing happens to move it along) where another spasm happens. Food or liquid may enter my stomach or it may just back up into my esophagus. It may come all the way back up or just sit there. So far the dilations have helped with the swallowing. I eat small meals of soft, cooked vegetables and tender meats. I also have gastroparesis.. so far my stomach is just slow to empty. I eat lower fiber diet because of it. Usually a walk or stomach massage will get things moving. Sometimes if painful I use a moist heating pad. For the moment the Achalasia is dealt with by dilation.. which I had done July 2017. The one before that was in 2015. I also have Barrett's esophagus... so not sure what is down the road for me.
Zaroga
20 years ago I had a laproscopic heller myotomy with a wrap . Now I go 3-4 days where I cannot eat or drink again....had recent test. shows complete absence of any peristalsis and narrowing of gastric cardia of esophagus. thorasic surgeon wants to undo wrap??thoughts?? or redo myotomy? thoughts? thank you.
Yes, that is why I am reaching out to the Mayo Clinic even though I am in TN.
-
Like -
Helpful -
Hug
1 ReactionHello @leeross123 and welcome to Mayo Connect. I am sorry to hear of the problems you are having 20 years after your previous treatment. We have many members who have talked about Achalasia and the treatments that they have tried. I'd like to introduce you to some of these Members. I hope they will post and let you know about their experiences, @evgenimat @fourof5zs. Here also is information about Dr. Stephen Cassivi at Mayo, who does surgery for disorders like yours. You might find this information helpful, https://connect.mayoclinic.org/newsfeed-post/meet-dr-stephen-cassivi/.
Have you considered a second opinion regarding this problem?
Teresa
Hello @tamad and welcome to Mayo Clinic Connect. I so appreciate your sharing something that has helped you to deal with Achalasia, Often it takes a lot of investigation on the patient's part in order to find some workable solutions and it looks like you have found just that! I commend you for advocating for yourself and seeking out some treatment.
If you are comfortable sharing more about this disorder, could you explain how long you have had this problem? How was it diagnosed? Did you use any other medicines? What other treatments, surgeries, etc. did you try before you realized that the sips of cold water would help?
Hi Teresa, I was diagnosed with achalasia about 4 years ago using manometry tests following rapid weight loss and frequent vomiting during and after meals. Given my age at the time (73), my surgeon advised against surgical procedures. Instead I have had botox injections into my LES sphincter muscle every 6 months to keep the muscle open enough for the food to go down into my stomach. I have not had any bad side effects like acid reflux after the procedures. Nonetheless, I have sporadically experienced the usual symptoms of achalasia, like chest pain and sphincter muscle pain. Fortunately, early on I discovered that drinking a few sips of cold water instantly stopped the pain. My gastro doc was not aware of this simple solution ... at least in my case.
-
Like -
Helpful -
Hug
3 ReactionsI do appreciate this information, @tamad. If we have any new members with this disorder would you mind if I invite you to their conversation? Many people could use encouragement and ideas for dealing with difficult symptoms!
-
Like -
Helpful -
Hug
1 ReactionSphincter muscle pain. I found that 3 or 4 swallows of COLD water instantly stops the pain.
-
Like -
Helpful -
Hug
2 ReactionsHave any of you had colonoscopy with achalasia. Wondered how drinking the prep went down. Wondered if there were a special prep for
those with achalasia. Doesn't seem to be much info about this.