Possible misdiagnosis

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Hey guys

I've recently found this forum and all I can say is that I'm delighted to have found people suffering from the same condition I have, however I'm due to get the heller myotomy soon and I am quite scared that I could have possibly been misdiagnosed. Firstly I have had this condition for around 4 years, however I found I suffer minimal symptoms, I can eat any food I wish, I do not bring up foods in my sleep and I also don't suffer any chest pain. The only symptom I suffer is when I eat, I find that food travels down very slowly down the esophagus and occasionally I decide to bring up the food to relieve pressure . I live in a small country (only a population of 1 million )so doctors etc arnt familiar with my condition. I had the manotomy completed last year and during the test I had problems with breathing ( due to another issue ) and therefore I had to repeat it. After this I was informed that I had achalasia and that was it, no other information. I did not do a barium swallow or any other tests. I also read online about a condition caused by cleft lips (which I have) that presents similar conditions that I am currently suffering from. Could it have been possible that I've been misdiagnosed with achalasia? Sorry for waffling but I'm only 17 and I'm worried about getting this life changing surgery if I do not need it, unfortunately explaining this to my parents hasn't helped as they know little about this condition and say that surgery is the best. Any information on to what I could do would be extremely helpful.

Many thanks

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  • Posted

    Matthew, the 'Manometry' test entails a tube with sensors in it, being put down yourm nose and into the stomach.  The sensors measure movements, pressure, etc. of the esophagus [or none].

    If you had the Manometry test, and were told you have Achalasia, then you likely do have this.  The manometry is the definitive test for Achalasia.  I had the test last June, which gave me a 100% diagnosis - Achalasia type 1 [paralyzed esophagus].   You could ask for a barium Surgery or other treatments are not 'cures' nor 'fixes' for this rare disorder, but the means to give us a better quality of eating.  Talk to your doctor or specialist.  Go onto the Mayo Clinic site and read their information, also I'm sure that 'Alan' [from OPA the Esophageal Patients Assoc.] will direct you to a guidebook that can be printed, which gives excellent information.  This is a very 'rare' disorder, so you won't find a 'book' on this disorder.  Good luck, Mathew.

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    • Posted

      Sorry Matthew, I missed a word...barium swallow test.  Surgery or....
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  • Posted

    Hi Matthew,

    Sorry for your condition. I think surgery is a last resort, especially if your eating problem is not as bad as some of us on this forum. You could have an endoscopy where they would dilate your esophagus to help the food go down more easily and see if that helps you. They put you to sleep for the procedure but it is not invasive like a surgery. Also, look into your situation with the cleft palette and get a second opinion if you can. Good luck.

    Maya

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  • Posted

    I don't want to diagnose you but I'd have to say the Heller myotomy is a procedure that makes the sphincter muscle to the stomach stay open. It doesn't sound like that's a problem for you. Having said that there is a new procedure called P.O.E.M. That is less evasive but it does the same thing. If your eating and food is going down into your stomach and doesn't come up I think I would do some more investigation on your situation. Sounds like your problem is more with the esophagus than the sphincter muscle. Good luck

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  • Posted

    Hi Mathew. I understand your situation well. To put it succinctly, do not have this surgery, at least not at this stage. This type if surgery is a last resort and is irreversible. Given your symptoms your condition and syptoms do not seem to warrant this surgery. Your symtoms seem to suggest a potential problem higher up the esophagus. I would try other remedies initially coupled with further diagnosis and second opinions. Initially try non invasive methods. For example I find taking a 25mg tablet of phenergen an hour before a main meal or perhaps a 2-5 mg of diazap (valium ). Then 10 minutes before eating drink a glass of water containing a teaspoon of sodium bicarbonate. Experiment with this type of approach. If this is not successful then their are less invasive techniques than surgery such as Botox and balloon dilation but your symptoms do not suggest relaxing the esophageal sphincter may be necessary. The test you have had so far can suggest incorrectly achalasia but the problem seems higher up the esophagus tube, perhaps a pocket in the tube where food sometimes collects instead of going all the way down into your stomach. Try your own management first only resorting to such drastic surgery as a last resort. Good luck and keep us up to date with your progress. There seems to many variants to this condition and we are all learning.
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  • Posted

    I try to get the barium test if your esphogus looks lime an upside down banana. Best way to describe it. Take a banana a person with a normal esphogus looks like one with stem at the top. Well people with achslasia their esphogus turn the banana upside down with stem at the bottom thats what it will look like with achalasia.
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