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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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