Diagnosing achalasia

Posted , 7 users are following.

This discussion has been locked due to a period of inactivity. Start a new discussion

Hi,

I'm wondering if anyone has any idea of the diagnostic criteria for diagnosing achalasia. I've googled it, and everything says that abnormal manometry is necessary for diagnosing it. I've had a manometry (god, talk about AWFUL) and the guy administering the test told me that, at first glance, the muscle contractions looked normal. He said he wouldn't really know if the test was normal, however, until he sat down and analyzed everything, including the resting LES pressure. 

Thing is, I've also had a modified barium swallow. That showed that my LES wouldn't open, causing liquid to build up in my esophagus and stretch it out, giving it the "bird's beak" appearance. I know this is classic of achalasia. I think they ordered the manometry to confirm the diagnosis. They also did a PH study to rule out reflux. I know I don't KNOW that the manometry is normal. I won't find out until I see the doctor. I see him on the 29th. 

I know I just need to suck it up and wait, but I'm just SO eager to find out what's going on. Can achalasia be diagnosed with normal manometry? The barium study also showed a number of "normal" swallows. I tend to be symptomatic when I have food in my stomach, and I couldn't eat before the manometry. She said when I'm symptomatic it's severe, but it's intermittent. I really think I have achalasia. The doctors have dragged a cardiothoracic surgeon into this whole hot mess, so I think they think I have it too, but the comment by whoever administered the test has me baffled.

My main symptoms are regurgitation and dysphagia, and they're getting worse.

Thanks.

0 likes, 8 replies

Report

8 Replies

  • Posted

    Amyu I cannot help you directly with the disagnosis but having had what has 'variously' been diagnosed as achalasia for quite some time I hope I can help with the symptoms. I have had all the usual tests but the last time I had a shot of botox in the esophegal sphincter the physician thought the sphincter was opening normally; and he postulated my problem may be further up the esophagus. So, I don't know exactly but all the symptoms I have suggest achalasia. I visualise my system with the analogy of a river in the stages where it empties into the sea. After a quick descent, like with the source of a river, food and liquid passes out of the mouth into the esophagus. But then like a river nearing the sea that winds across the plain and finally empties into an estuarine lake with a sandbar to the ocena. Sometimes, this sandbar gets blocked and needs to be cleared and/or sometimes in the meandering river upstream a little, large logs may cause blockages or erosion causes temporary blopckages. If you think of the logs has 'hard' food, erosion as inflammation, the sandbar as your esophagal sphincter you should get the picture. 

    All well and good but what do we do about it and clear the 'river flow' so it empties into the sea easily i.e. food and liquid more easily enters into our stomachs with minimal blockages. Over almost a couple of decades of trial and error I use a range of medicines and regimes to help me get along. Like yesterday we were having friends over to lunch. I took a 25 mg phenergen tablet and a 2mg valium both of which assist to relax the esophageal sphincter. (Note phenergen may make you drowsy but after a while your system learns to cope with this - take the phenergen abot 2 hours before a main evening meal - it should help with the meal and give you a better night's sleep). I also take 2 x 20 mg ibuprofen to assist with reducing inflammation. This type of action, sometimes varied by using other muscle relaxants does seem to help most of the time but it is not always a panacea; and I tend to space out having larger meals and minimise alcohol intake. After several 'interventions' like balloon dilations and botox injections I am tied of these interventuions which do not give lasting relief. Key hole cutting of the sphincter may help. I try to stay away from these interventions if I can and will only resort to them if one day I have to.

    On the non-medicinal side I try to remain as relaxed as possible, keep busy and have reasonably consistent exercise (walking is great and gardening). I also use two pillows when sleeping at night. I also drink a lot of water in an attempt to 'flood my river system' and to open the 'sandbar' when necessary. What is also helpful is having a glass of water with a teaspoon of sodium bicarbonate not long before a meal and drink water during and after the meal.

    I hope my analogy and suggestions are helpful to you. I do find them helpful on the whole but I appreciate the nature of the problem and what works for one person may not work for another. Yes, I do have times when things seem pretty bad but I persist. Finally, I find as frustrating as achalasia is trying to maintain a sense of humour helps and being honest with people in dining situations and telling them in advance that you have this type of problem - surprising they realx and more importantly so do you because you are not concerned about embarrassing yourself.

    Very good luck and my best wishes.

    Report
  • Posted

    Hi,

    I had 3 tests done before I got diagonosed with achalasia. The barrium swallow showed normal, no reflux the manometry, and a CT scan which showed my sphinxter muscle that allowed my food to go into my stomach spasm shut. I had the botox first only to find out that it would be temporary and need to haeve.   the heller myotomy procedure.  They had me misdiagonsed  with reflux for months until it got to the point that no food or water would stay down. The procedure has worked and has been a year now .. My GI doctor was surprised i had achalasia; and it was the scan that showed it,  Hope this was helpful..

    Report
  • Posted

    Thank you for the replies. Reg - thank you for the tips/explanation. I haven't started any medication yet, but hopefully the doctors will be able to do SOMETHING for me when I see them again in a couple weeks.

    June - do you mean you had a normal manometry? I do NOT want more tests, but I especially don't want another manometry. It was miserable haha. 

    Report
  • Posted

    Hi Amy (from another Amy!)

    It does sound like Achalasia but I can't diagnose you, of course.  I do have some resources to suggest to you, however.  There is a book called "Living With Achalasia" by Steven Horwitz that is a free download online.  Also, he is the administrator of a Facebook group with the same title.  The book does an excellent job of discussing and clarifying an accurate diagnosis of Achalasia and contains lots of other important information for anyone with Achalasia.  Steven has Achalasia himself and shares his story.  There are other helpful Facebook groups as well.  One I really like is called "Achalasia: Questions, Answers and Support" and this one is administered by Richard Friedman.  You might start by downloading the book and reading the section that covers diagnosis.  Once you get a proper diagnosis, and if you do indeed have Achalasia, I would recommend joining these Facebook groups.  They offer wonderful support and community for people with a rare and misunderstood disease.  Good luck!  Amy

    Report
  • Posted

    Hopefully on 29th you'll have a defintate answer, but in the meantime you are understandably frustrated.

    You already know this, but eat small and slow, with plenty of water.

    I wish you well.

    Report
  • Posted

    They do not always need manometry to diagnose achalasia, because the barium swallow would often indicate that, but the manometry is a very prudent thing to do because it shows exactly where the pressures and muscles are operating well or poorly, and it is often important to do this to ascertain the best approach to treatment.   It does sound that the doctors are being thorough, and I would be reassured by this in your position.
    Report
  • Posted

    AMy  I have so much anxiety i cantgo throught this manometry, I take valium and cant relax I have sjrogens no salia andmyleft nose in pain from my cheekimplant . hve you had this test?
    Report
    • Posted

      The modern high resolution manometry devices are far less uncomfortable.   I imagine that not all clinics will have these yet but it is worth asking.
      Report

Join this discussion or start a new one?

New discussion

Report as inappropriate

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up