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I may have Achalasia or some sort of Esophagus Motility problem???

Posted , 12 users are following.

Raellen
Raellen

I am looking for advise or answers from folks who have Esophagus Achalasia or Esophagus Motility issues who may offers some answers for me. I will be very appreciative of all replies.

Back in June, 2014, I started having the sensation that I had food stuck in the mid chest area of my esophagus, right between my breasts. At first it was just in the evening time, after comsuming my meal. Then it started happening almost after every meal. I would drink water, one 16 oz bottle after the other trying to make it go away, sometimes getting relief, most time not. It has never been painful, I have never had problems swallowing, just the sensation that the food was not going down. 

On July 1, 2014, I had an edoscopy done, things checked out that I did no have a stricture, no cancer according to the biopsy, but I did have redness and inflammation. My Gastro Doc said I may had been experinecing a spasm. He put me on reflux meds.

Now it is August, and I am not getting any relief from the meds, still having that feeling of stuck food after meals, and actually it is radiating a bit more area, but still mid chest. So I go back to the Dr., he says I maybe having some mobility issues? He wants me to have the Manometry test done! sad I am horrified! I have GAD, and only deal with it at an elevated stage when I have medical issues that require horrid test and cause little demons to run around me with stabbiNg me with their pitch forks!  I asked if I could please just do the Barium Xray test instead, and he was like, NO, I cannot help you if you do not do the Mano test. He has ordered the Barium test, but said it was a waste of money, as I would have to do the mano regardless of the Barium test outcome. 

I have been doing a lot of research and I am scared. In the early stages of Achalasia, has anyone had the symptoms I have shared? It has never been painful, I have never had problems swallowing, just the sensation that the food was not going down. I also  feel like I have to clear my throat all the time, not sure if this is a symptom of the acid reflex meds though. Could it be something else besides motility issues? Thank you for reading my post. 

1 like, 34 replies

34 Replies

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  • DJ-RN
    DJ-RN Raellen

    Posted

    Hi, depending on the degree of your Alchalasia that will determine how the Docs go about treating it. I myself aspirate while at sleep and develope aspiration pneumonia. I'm sure you'll have to have barium swallows if you haven't already, Endoscopy and a manometry. The manometry is one of the most useful tests to tell them the degree of yours. Often, you can just have dilatations of the LES (lower esopgeal sphincter) or they may treat you with Meds such as nitrates or CCBs. (Calcium Channel Blockers.). Or, you may need both a Heller Myotomy with a Fundoplication. Look those two terms up and read about them. I know you are scared. Especially if you choke on food/fluid at sleep down your trachea. It's very frightening. I'm trying to find info on people who can tell me what it's like to have both a Myotomy and a Fundoplication. That's what the surgeons are wanting to do for my Alchalasia.

    Good luck. You'll learn different ways of coping with the symptoms you're having through trial and error. Esp what fluids and food will pass quickly into your stomach. It sometimes takes a day for my meals to clear that LES sphincter.

    • AlanJM
      AlanJM DJ-RN

      Posted

      I think you have to be careful about the aspiration at night.   At the last patient support meeting one of those present described how her partner, who was a medically qualified doctor, heard her aspirating at night in her sleep and realised how serious it was.   It ended up with her having an operation to remove her oesophagus, which I know sounds very scary, but she was fit and well enough a couple of weeks after the surgery to travel to the meeting to tell us all about it.

      ​If you have a myotomy, which in very many cases does help the food to go down a lot better, the fundoplication is necessary to keep the stomach contents from refluxing up, which itself can be a long term health hazard. 

  • laura54061
    laura54061 Raellen

    Posted

    I have just been diagnosed with ineffective esopegus motility 😥 they have said there is no cure and they only thing now is management.  I really don’t know what I’m going to do! Has anyone else been diagnosed with this?? 

    • jule44
      jule44 laura54061

      Posted

      Yes that's what I have.

      What were your symptoms at first? and is there another underlying cause or did it just happen suddenly. Mine came on when I was sick. Maybe the result of a virus?

      However I am relieved i don't have Achalasia at least. I feel very sorry for those who have that condition. 

      I'm learning to live with this and we need to avoid foods that congeal etc lBe upright after meals and drink water etc. They mentioned that maybe after 5 - 10 years or so things may get worse? Im 45.  It would be good to hear from those who have had it for a while to see what we might expect? I'm okay, doing well and you can manage this. Try not to worry about it if you can as it will make things worse. 

    • laura54061
      laura54061 Christina-18

      Posted

      Does this work? I’ve never had accupunture but willing to try anything to help. 
    • laura54061
      laura54061 jule44

      Posted

      How long have you had it? No he said he can’t give me a reason some people the muscles just stop working and they can’t fix them! My symptoms started gradually and now have gotten worse! 

      What is the difference of acalasia? I keep trying to research IEM but there isn’t much information around it! 

      I stopped eating solids all together and went onto liquids as it was too draining and stressful trying to eat foods. My specialist has basically said I need to eat normal but use fizzy  juice and water to wash it down and eventually it will! 

      I haven’t had any advice for the future is it will get worse or if other problems may come from this I feel a bit lost to be honest! I’m only 27 and feel like why has this happened and why can’t I do anything about it!

      Does it affect your quality of life with eating, I.e. going out for dinnner, eating with friends? 

      Any other tips on how to manage? 

      Thanks xxx

    • jule44
      jule44 laura54061

      Posted

      Hi Laura

      so sorry you are dealing with this and struggling to eat solids.😥

      I believe there may be different variances of this condition.: ie some are more severe cases and some are less severe depending upon the results from your barium and manometry tests that you likely have done? Fortunately My case can be managed quite well at the moment.

      I first noticed this problem 3 1/2 years ago. Solids would stick in my throats especially toward the end of a meal. Some foods were more likely to cause issues: ie cereals, rice, cake, bread, biscuits, grated vegetables, French fries, stringy food, foods that congeal or are crumbly.  My initial reaction to the feeling of food getting caught was to hawk my food out or keep clearing the throat. So my husband and two children got used to all my noises around meals. ,!

      In public I tried to hide it or would go to the bathroom. At that stage I had no idea what the cause was. Thought it was my throat. 

      So a year ago we got the tests done as you will see from my previous posts.

      After the tests, I was told to always wash my food down with water and stay upright after meals. I now resist the urge to hawk my food up and relax and just keep sipping water.  If I lye down too soon after a meal I get some discomfort in my chest so I avoid doing this. 

      Fortunately my esophageal valve is relaxed so food can move into the stomach. My understanding is that Achalasia is when there is no peristalsis of the esophagus and the valve to the stomach does not relax and let food through so it's like a double whammy. 😢

      Yes, there is little to information out there for people with this condition. I found one excellent guideline/PDF "Recommendations for patients with ineffective Esophageal Motility" PAWS  paws.gru.edu . I don't know how to copy the link sorry

      One thing I keep hearing from reading these posts is to try not stress around the time you are eating if you can and I believe it really helps. The feeling of food in the throat is alarming but I learnt from the swallow therapist that this feeling is referred from the nerves in the  esophagus so likely the food is further down. This information helped me too relax. Of course every case is different and some people have very serious challenges. If you are struggling to eat solids can you go back to your specialist? I did hear that for some cases they do offer medication but I don't know how helpful they are.? Hopefully someone else will offer some better advise. 

      Hugs jules

       

    • AlanJM
      AlanJM laura54061

      Posted

      By IEM, do you mean Ineffective Esophageal Motility?

      ?It is quite often caused by the nerve endings driving the muscles that control the peristalsis function, ie the successive contractions that take food from throat to stomach regardless of gravity.   But what causes that is indeed unknown.   there are theories about possible viruses.

      ?There is a bit more information in 'A Patient's Guide to Achalasia' that you can download from the website of the oesophageal Patients Association under The Oesophagus and Achalasia.

      ?There is not a cure, as such, but the various procedures can make things better by allowing the system to use gravity for food passing down into the stomach, and cutting the muscles that are clamping the system shut, usually round the lower oesophageal sphincter, the valve between oesophagus and stomach.

    • alana316
      alana316 AlanJM

      Posted

      Curious as to whether you’ve come across any links to IEM and Achalasia as a result of the hepatitis A and hepatitis B vaccine? I’ve had a myriad of things go wrong with my body since I had the first two doses of the combined vaccine. 
    • AlanJM
      AlanJM alana316

      Posted

      Personally, I have not heard of this.   In the UK the Medicines Regulatory Body MHRA keeps a log of potential additional side effects on medication other than those to be found already on the information leaflets.

       

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