u/grohling24

My Story:

Starting having issues in 2023, my main complaint was chest pain, never really had the typically reflux feeling but would get hoarse voice sometimes. Random things like oatmeal, protein shakes, milkshakes would trigger it. Sometimes Coffee. But things like Pizza never really bothered me.

Got into a Endoscopy quickly and had LA Grade A esophagitis and a patulous LES. (This patulous LES never showed up on any of the following 2 scopes)
Put on PPI's and on my merry way.

Never improved and got another scope in 2024 and a ph bravo capsule.
Endo was clear and bravo was negative. Hospital never gave me a Demeester score just said it was negative.

Barium swallow in 2024 showed Reflux to mid-esophagus with provocation. Doctor didn't think this was abnormal.

Manometry in 2024. Showed No HH, was otherwise normal. I was sure of a bad LES but I guess not. 1 failed swallow that doctor wasn't concerned about otherwise my les was great.
I will repeat what everyone says this is an awful test. I've had multiple GI's say the same and some even say they wouldn't do the test themselves and wouldn't ask patients to do it. (I feel like every GI should have to endure this dumb thing)

Still had chest pain, did another scope and ph bravo capsule test in 2025.
Finally found the 2cm Hiatal Hernia I suspected. But the bravo test was again negative with 0.9 Demeester score. I couldn't believe it because I felt horrible during the test and tried every food that bothered me.

I live in a major U.S city and found a great surgeon at a big hospital doing a relatively new surgery. I figured the HH was the cause of the my issues and didn't want it to just get worse and have to eventually get a fundo.
My surgeon agreed a Tif, Fundo, or linx didn't make sense because my testing showed everything was normal except the HH.
So 3 months ago I had a gastropexy and cruroplasty. (Kinda like Bicorn, my post op notes did say good flap valve seen) This surgery has helped others in this sub and the HH sub, those users had 40+, 50+ Demeester scores)
My Hernia is now gone and my the hole in my diaphragm is now tighter. During the surgery they did a Endoflip and I went from 4.6 to a 3 post surgery.

Post surgery healing was the normal amount of suck I've seen others say.
Now to the current day.
Still have the chest pain, soda triggers it, sometimes coffee but sometimes coffee doesn't do anything.
After surgery Esophageal Hypersensitivity was brought up again. (I was on Amitriptyline for about 6 months in 2023, seemed to help a little but I assumed it was working against the HH so I had to fix that to 100% solve the issue)
So I tried Nortriptyline and felt awful and stopped after 10ish days.
Then the next 2/3 weeks had globus, tight throat, feeling of crumbs stuck in my throat and the worst hoarse voice I've ever had which gave me tiny blood in my saliva.

Went to a ENT for suspected silent relfux or LPR and they said my throat was great and they almost laughed at the tiny blood in my spit. (I showed them a picture)

So I had a barrium swallow which showed zero reflux, normal primary peristaltic wave and mild narrowing at the GE Junction. Both the tech and my surgeon say that is expected.

So now I'm lost. The globus, tight throat, stuff went away for a few days then returned. I have been waking up with a sour/dry throat but taking gaviscon liquid doesn't help. (That waking up with a sour/dry throat did happen before surgery too, not all the time but weeks at a time then go away, figured it was the HH)
I get that sour/dry taste doing random things like walking my dog or riding a
bike. (Same as before surgery)
I had coffee the other day and was fine.

Really not sure what to do next besides more testing. But if they just show up normal again whats the point.
One GI wanted me to get on PPI's again but why? They never worked and if for some reason they did work now that would just point to reflux and another surgery.

Surgeon agreed and I suggested Amitriptyline again because what else is there left to try?
I do have a appointment in 2 months with another GI specialist but I honestly don't see anything else coming from that besides more testing and if the testing is abnormal then that just means another surgery....

Wanted to share my story, maybe it helps someone. I've been a lurker on this sub and the HH sub since this all started.

If anybody has any thoughts let me know. Maybe this is all Hypersensitivity/stress/anxiety?
Maybe I still need to heal? I've seen some users have a setback around the 3 month mark post surgery so I'm hoping thats what this is)
I'm just exhausted and want my life back.

P.S Also want to point out that the surgery I had has helped many people so I don't want to scare anyone away just wanted to share my experience. I know some people aren't fans of the fundo and look for alternatives. Get proper testing and listen to your surgeon.

P.S 2, Normal gallbladder, normal cardiac testing.

TLDR: Bunch of testing was normal except 2cm HH, had surgery, still have symptoms.
Will update when I have new, hopefully good news!