@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.

@jlharsh How do you think a numeric diagnosis would help? I was not looking for the number of GI procedures. It all started with getting ill and losing my voice. I do feel like my pain from IH is good enough here what I was concerned about was the stent. Is the stent working or blocked. I want a care plan. I want to know how tests guide treatment and how I could have a better quality of life. Unfortunately since the probe is larger and it took a great deal of force to get past my nasal anatomy how a larger tube could even pass and how many learner would be watching. It is hard for me to breathe through pain with an observes even 2 extra. I can’t explain why I feel this way, but I feel the need to hide my pain. I don’t want people to see it on my face, I used to be able to do well with a doctor leading me through painful things by telling me what was going on. I feel information helps me and it might scare others, but it helps me even if it’s something really hard. Not knowing risks alternatives and signing blank consent forms is difficult. After neuro surgery I woke to vomiting, urinary retention and severe pain. Clear expectations help me. It is better for me and the nurses if I know what might happen.

My fiend just got back from Mayo for a 2nd work up on a neurology disease. He said it’s different. He is treated with respect and the doctor is in charge. Here the doctors need to comply with clinic managers, check in people and the doctor must comply with medical assistants who say they know more than the atending and the residents. One actually told me the doctor and surgical nurse were wrong. I trusted my doc and the surgical nurse and didn’t believe the OR technician even though she was old.

For me I need to know why I need another upper GI right after the other. It is hard to care for myself alone after surgery and procedures with general anesthesia all alone.