Saw my actual surgeon today, and he was rushed but actually not super dismissive. He is seriously doubting the fact that I still have acid reflux (as am I...) but he placed a pH probe so I'm having a 24 pH monitoring as we speak. Incredibly uncomfortable, more so than last time, but then again I did just have surgery. Strangely enough I've not had a single symptom since the darn probe was placed. Starting to think I'm actually going insane. But it makes you all phlegmy and I swallow a lot from the irritation so I guess that helps ease the usual burn. He thinks that food is gathering in the esophagus and not going down and I'm sort of... refluxing from within the esophagus which is irritating.
He wanted to do a scope but I need to be put under for scopes (sedation doesn't work on me, apparently I get aggressive) and there's just no way now before the holidays. If this shows acidic reflux he will do a scope after NY though. Or if my symptoms persist.
Now that he's actually super listening to me he's starting to think I maybe never really had reflux?? Or, of course I did, but that it was not the cause of my absolute worst symptoms. He says that if Gaviscon or similar drugs don't help even a little, the issue can't be reflux. To which I responded well then I guess I never had just reflux because that was always the case during my worst flares.
He agrees that the pain is in my esophagus and that's where the problem is, but he doesn't believe it is reflux. He's being quite humble about it though and saying he's not sure and you can never be certain so we're doing the necessary testing to be sure. Also got some liquid Oxycodone that's supposed to work locally as well for when my throat burns so much I basically just cry... Also gave me something for cramping/spasms in case that's what it is.
So it was a good meeting, he was helpful. He was upset with the other doctors and nurses who have given me conflicting advice and especially the doctor who said the surgery had likely failed. The CT clearly showed it has not and my surgeon called him ignorant and unprofessional
He wants me to ease off the PPIs. Which scares the heck out of me as I feel they are the only thing that helps. But as I've had mucous membrane reactions from other PPIs (blisters and extreme dryness from Omeprazole and Nexium) he feels that maybe the pain is in part a reaction to the meds.
tl;dr - First helpful appointment I've had since everything started going to hell. My surgeon is very good, he's just distracted and you really do have to make him hear you. When he does, I feel he makes the right choices.
