After Bravo they want to do esophageal manometry - any experience?

Hi, @sylvermoon8 - I wanted to do two things: 1) provide some information about esophageal manometry and 2) connect you to others who may be able to talk about this test and perhaps a PH impedance study, as well.

Here is some Mayo Clinic information on esophageal manometry:

- Esophageal manometry http://www.mayoclinic.org/tests-procedures/esophageal-manometry/basics/definition/prc-20014211

Also, @jackiem95 @jackielb @prafu @hopeful33250 @engelee have posted in discussions about esophageal manometry before, and I'm hoping they can share their personal experience with it or a loved one's experience.

I'm guessing you have these tests scheduled for the near future? If so, will you share a bit about what prompted the doctor to order these tests for you?

Thank you for all the information. I did look up the tests. I will check out those discussions!
I just had an endoscopy and Bravo procedure. My doctor messaged the following: “The Bravo pH study was negative for acid reflux. I recommend an esophageal manometry and pH impedance study off therapy if symptoms remain problematic. This study evaluates the esophageal muscle function and evaluates for weakly acid or non-acid reflux, which can be missed on the Bravo study."
I had questions which I sent and all I got was a med assistant asking if I wanted to schedule the tests. Of course my symptoms are the same as they were before the Bravo study. My symptoms have been post nasal drip, and waking with a sore throat and some discomfort by my upper stomach. It goes away when I get up. Doctors insisted I needed to be on medication. No medication they tried relieved my symptoms, they kept adding more and I ended up with more pain and worse reflux. That is why they did the Bravo study.

@sylvermoon8 - good to get the results on no acid reflux and with your next steps. I'm sorry no one answered your questions.

I also wanted you to meet @sickvick @ken82 @fourof5zs @therjes @margaretmary @faithann64, who may be able to tell you from personal experience or that of a loved one about what it's like having esophageal manometry and a PH Impedance study.

Are your symptoms bothering you (or did they bother you) again today?

@sylvermoon8 - I also thought you'd enjoy meeting @jlharsh.

Thanks for the tag, @lisalucier. Hi @sylvermoon8, we actually met earlier on a different discussion about esophagus dilation. At that time you were recovering from your Bravo placement and experiencing uncomfortable symptoms. I hope they have subsided. https://connect.mayoclinic.org/comment/1483766/

I am glad to see you are making progress narrowing down what may be causing your discomfort. I am interested to learn more about these tests, particularly PH impedance study as you know more.

I am not sure what to share about my experience. I don’t necessarily have a diagnosis to share. Rather, focusing on function and having improvement with each recommendation from my care team. Do you mind sharing more about medications that have been recommended and what you have tried?

@sylvermoon8
Do you feel ready or do you want to wait a bit? Trust your instincts and what feels best for you.

@jlharsh what has helped you? I put mine off because my body was exhausted. Probably won’t have as I am now DNR and stopped invasive procedures.

Like you @9yearspast I have been dealing with systemic symptoms that needed sorted out and addressed one at a time. I remember that you have had surgery and are struggling to manage pain related to intracranial hypertension, if understand the latest with you from your discussion, Seeking care for intracranial hypertension: Rare Brain Disease https://connect.mayoclinic.org/discussion/rare-brain-disease/.

I want to address your question, what has helped me. It will help me explain more if you could describe a bit more about what you are wanting to know from me. I am hopeful I have experience that will help so I want to make sure I address what you are asking.

You mention putting medical invasive procedures off. Is it an esophageal manometry or something else you are referring to? If so, are you thinking it is related to other things going on in your body?

@jlharsh I am putting off all invasive procedures until my next life and possibly many more lives. As far as manometry they wanted to do it. The reason was unclear as it is a teaching hospital and they had just obtained new equipment. I am on a PPI and asymptomatic, I am not going to have more surgery or Botox. The appointment with the atending was brief they don’t even have a chair that’s how brief. I was told I might be able to go off the ppi was the residents reason or they might be able to send me to a dietitian for a reflux diet if they do manometry with ph impedance. They did a nasal video laringscopy for losing my voice and I entered the vortex. She used a 3.1 mm probe and it’s was a complete blood bath with both nostrils. I don’t have GI bleeding and the upper GI was completely normal no erosions. They did not have a care plan so it’s hard to understand things with 4-6 fellows involved in my care. Unfortunately they cannot afford probe covers. My friend had it and she has CPRS I found out after I canceled mine she is on fentanyl patch and she fainted from the pain and bleed. They did it again and she fainted again and bled. Where we go according to the nurse most patients cannot endure it and they place it under general anesthesia. I am not sure if that is because they don’t use the probe covers. For procedures here there are a great number of learners who observe for one there were 35 observers not GI. I couldn’t get enough air I had people around me head to toe and I think they forgot a patient was there I fainted from the stress. This was a study and it was before my surgery. These people were there to watch my IH surgery and this is common there are a lot of learners. Not enough patients to go around. It is procedure heavy diagnosis low. My insurance at the time was good everything fully covered. I am on DNR and a major reason is I have done what I can to rehab. I want quality of life more. My friend was just at Rochester for Mayo he got some great help neuro. He said things ate more diagnosis not just procedures and tests like here. We get some great doctors and they stay while in contract then it ends and they leave. I had someone from out of state evaluate the need for manometry with PH impedance. She said that it would give a numerical value of the reflux and that would not make sense for me given that I am well controlled and not wanting treatment beyond ppi.

@9yearspast I am guessing that the might be able to pass the tube through with more force than the nasal video laringscopy but I don’t know.