Understanding your Manometry Study Test

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Since having all the tests I’ve had, some repeated, but all showing a diagnosis of Achalasia, I’ve not had my manometry explained to me. I’ve just had, “yes the manometry confirms your diagnosis.” And then, “looks like you have GERD”  But, since doctors are very busy where I was being seen, it didn’t get explained and I’m too exhausted, frustrated maybe, or just so over dealing with the costs of numerous “consultation” appointments in which I felt rushed. I just want to know what these numbers mean, is there a website which explains when study results become the golden egg of an Achalasia diagnosis. 

I’m happy to report that I’ve been accepted and scheduled at a new, different clinic/hospital that will be treating me from now on, no more being dismissed or interrupted. That there is a clinic with specialist who treat Achalasia AND Lupus! I was floored to see that this illness and it’s connection in patients like me, who have an auto immune disorder most probably is the reason my swallowing and malnutrition, that had turned me into a shadow of the person I once was, is at the core of the rapid progression of my Achalasia (or whatever it is I have) That hearing other people’s stories on here and Facebook support groups helped me realize that sometimes we need to seek second and third opinions. That no one, even doctors, are perfect and I needed to stop believing every different, conflicting diagnosis and believe in myself as only I can look in the mirror and say, well if that doctor *thinks* it’s this or that then that’s the gospel, and I need to wait another month until the “follow up of the follow up” to learn my fate. 

So, in doing so (stopping the ridiculous amount of endoscopies and suggestions of each new specialist brought in to discuss my case which seemed to me as a slam dunk already... you’ve got Achalasia! However ALWAYS followed up with a “But....... you need to make an appointment so doctor can discuss these results... again... with you) I have become so exhausted and frustrated by the number of road trips 160 miles away to see the doctor so he can explain these results when he could have after I had the tests. We waited after I was well enough and awake enough to have the doctor give us a quick update of what he did or did not find and was helpful in that at least we had SOMETHING to grasp onto until they could fit me in to the schedule. 

Like I said, I and my spouse and other family just have gotten frustrated with this last round of proper tests, waited patiently in that little recovery nook for me to wake up, and finally to see the doctor and totally understanding he only has time to say how procedure went and maybe touch on, “yes we did find this or that but will be making a appointment with you to adequately discuss everything, in the near future”  was overlooked and instead I had a nurse asking me to sign some discharge papers, with no instructions on what to do now? Do I need to be taking something like PPI’s or anti spasms? Hello? Crickets.....

But today is a new day and I’ve got a “team” of doctors who were able to get the appropriate records and say “yes, it appears you need major help and we are ready to help you and give you options and hope”

The only thing I’d like, personally for myself, is to have the Esophageal manometry interpreted to me. What do these numbers represent?

I’ve googled and I can’t find a guide for the patient. 

If I call the doctor who performed the manometry and the EGD’s I’m told I have to make a consultation appointment, usually a month or two out. Which I always make and then realize, oh my gosh, I can’t possibly drive over the mountain again for a 15 minute consultation when I’m so weak, I need to cancel and beg for a possible phone call telling me results. But, it’s agaisnt their policy, Doctor doesn’t do calls, you have to come in. 

I explain once again that I’m getting worse, and maybe could someone, anyone, just take a look and tell me what that number represents ? Or what the consensus was after seeing results is? I’d be so grateful just having an answer, any answer of what that IRP number is indicating. 

This has been the strangest journey I have ever encountered. 

When you don’t feel well, so weak, willing to do whatever is asked of you just to get an answer to one question. But you’re met with this formal “you must come in, you must complete another release form, oh you must call his office directly and request ....” ughhhh!!!

I’m paranoid now. It shouldn’t be this difficult. So, if anyone can give me an idea of how to read my manometry results just so I have an idea of the meaning of the numbers that would’ve wonderful. I had it done last July 13, 2018. I know the new clinic I’m going to will explain them to me, I’d just like to have an idea what they represent now. For my own information. Thank you in advance !! I hope everyone is finding their own answers. I’m grateful that there are excellent specialists and surgeons who deal with this. I just would like a bit of help interpreting this one text. 

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7 Replies

  • Posted

    I am sure that 'Alan,' from OPA [Oesophageal Patients Assoc, UK] will be replying to you.  There is good information on the OPA site....so google, Oesophageal Patients Assoc, and click on the 'A Patient's Guide to Achalasia'.  I have type 1, Achalasia, my esophagus is paralyzed, no movement at all.  Alan suggested that Guide to me, and I printed a copy for myself, and put it in a binder.  There is a wealth of information in that Guide.  You can also go online and check out Manometry test [Mayo Clinci site is good].  I live in Canada.  The UK have support groups, and their website, and this Forum, which has been very helpful to me.  There are those on this site, that will share info, etc., so don't feel that you are alone.  Just come on here, and ask questions.  Make sure that you are pro-active with your specialists ... keep at them until you have answers.

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    • Posted

      Thank you! Doing so right now, and yes, Alan is so helpful I respect his wealth of information which helps to keep me calm and moving forward toward having surgery. I’ll find the site and the Patients Guide. Just being told you have Achalasia is a great step forward but sometimes you need it explained to you, like what is exactly happening during my episodes, which are daily now. Thank you again! 
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    • Posted

      You are welcome.  Living with Achalasia is not easy.  We don't 'live to eat, we eat to live!'  Those on this Forum, for the most part, are very supportive and willing to share their journey with others.  And this helps so much, to know that others are experiencing some of the same things.  Those who do not have Achalasia, really cannot fully understand what we are going through, and what we have to live with.  So, ask many questions on this Forum.  Others 'will' respond.  Achalasia is a rare disorder, so we are not a 'huge crowd' of people!  What you, yourself, share, will believe it or not help others on this journey. 

       

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  • Posted

    Meant to say in my previous response, is that the first Manometry test I had done in 2016, gave me a 100% diagnosis.  My surgeon ordered this test be done again, in March this year.
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  • Posted

    And again....in the 'A Patients Guide to Achalasia,' there is a section that describes the 3 types of Achalasia.

     

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  • Posted

    Hi, I’m so very sorry that you are not being given the information from the tests explained to you. It is exhausting and, frustrating to the point you feel you are becoming crazy. I don’t know what the numbers indicate, all I can tell you is what you probably already know and, that is the manametry test is the gold standard as far as diagnosing Achalasia along with the barium swallow. The manametry shows how your muscles and, nerves are or, not working within the oesophagus. It registers the amount of pressure you have in order for the peridactil muscles to push your food through into your stomach and, to check whether the oesophageal sphincter muscle is relaxing or, not. All I can say is if the oesophageal sphincter isn’t relaxing then there is a possibility that this can cause narrowing of the oesophagus and, hence the difficulties with swallowing. It is a complete and, utter mine field. It saddens me greatly that the Drs don’t always appear to fully appreciate what we endure on a daily basis. It is one hell of a rough ride and, often you feel like you are talking to the wall. It affects all aspects of life in general, family, socialising and, can become very isolating leading to bouts of depression. I personally had a complete meltdown last week as like yourself I am praying for answers. I was prepared for an oesopegetomy but, I’m now struggling with the most awful abdominal distension, my surgical team thought I had a tumour. Fortunately it was not but, it is a complete mystery as to why I’m so distended and, having breathing difficulties due to all my organs being pushed up and, putting pressure on my lungs. They now want to try a last dialatation as I’ve had two previous open thoracic surgeries many years ago for the Achalasia. Like yourself I have now been referred over to another surgeon who will hopefully be able to help me as my present medical team have all but said they are out of there depth. I’ve just been discharged a day ago after having to stay in hospital for 3 days due to severe dehydration. Then I’m just sent home living on liquid feed. My family has fell apart so I’m now dealing with this alone at home. Please, please don’t give up!! It’s easier said than done because it is exhausting and, the guilt of being sick all the time is often unbearable. Hang in there, a day at a time. I set myself a little goal everyday, even if it’s to just to weed the garden or, take a walk. Otherwise at the moment I don’t think I would get out of bed. I’m so distended I can not fit into my clothes around my waist so it leaves me with no self confidence at all. Loosing weight everywhere bar my stomach as I look like I’m well over due to give birth. Could you not write a letter to the team that performed the manametry and, explain how you are feeling, let it all out on paper and, ask them to give you a full explanation in order for you to understand and, hopefully move things along more swiftly. Just don’t give up, we all have our bad days where we can’t see any light at the end of the tunnel. I’ve been there believe me. It’s not easy but, If you can find the strength make your voice heard, just another lap. Take care of yourself and, don’t expect too much from yourself either. It’s difficult for others to understand what you are experiencing and, it’s horrendous. Look after you and, check in with me anytime x
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  • Posted

    I think it is perfectly possible and reasonable to seek a second medical opinion to interpret the original manometry test result. It would show the pressure exerted by the muscles at varying stages down the length of your oesophagus. And that would indicate the location of any problems.

    But I do not know anything about lupus. Some achalasia patients may have developed the condition with a contributory factor of some kind of immune system disorder but I do not know enough to be able to help any further.

    You are right to try and concentrate on getting the right diagnosis as a priority.

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