So much has happened since march ugh. I don’t even know where to start. After this post I met with the neurospeach Dr which came back normal as well as the video barium swallow test. I also had and endoscopy which reveled a schatzi ring (sorry if I miss spelled that) and weak lower sphincter. He believes the mis to lower esophagus isn’t functioning properly or the nerves aren’t responding as they should so it’s spastic. I also TRIED to have the esophageal manometry test. I failed miserably. I couldn’t complete it because they couldn’t get the scope thing down with out me throwing up. That was the worst hour of my life. That test is awful. The GI dr said I do have some moderate midesophageal dysphagia.
With all that said, they all refuse to do anything to help me because of my Ehlers-Danlos. So all they have me doing at this point is taking 40 mg of Prilosec 2x daily with 450 mg of ranitidine. That does seem so do anything either. I’ve resorted to sleeping in a recliner almost sitting straight up. I’ve restricted myself to almost a liquid diet because solid are just a sure way to be in pain. Not sure what or if they ever do anything.
Just as the refused to do anything, my septum collapse and created s bone spur in my left side of my nose and I can’t breath out either side of my nose. Sounds great right? Stupid Ehlers danlos syndrome seems to have the upper hand here. We were trying to let my nose heal some, (I also have a large ulcer in my nose), but that didn’t work and now I have exposed cartilage. So next week we are headed to mayo for surgery to get my septum rebuilt, a skin graft, and something for my valve support. Not really sure. Lol sorry
As far as Drs. I really like my GI dr. And my ENT. I have yet to find a neurologist within mayo or out of mayo that I like. They all act like they know everything even when u can show them they are wrong they don’t wanna hear it. I gave up on neurology. Which sucks for me because of my neurology issues. I am like you that I prefer they don’t dumb down anything because 90% of the time I understand just fine, expect with GI and the Ent. Man they speak foreign languages. It took me over 2 hours to understand my report from the ENT about my nose. The only thing I understood out of all of it was “her nose is severely screwed up”. Maybe not so much in those terms but pretty much haha
So that’s my chaotic life right now. Hopefully surgery goes smooth so I can get back on track with GI and nothing else gets screwed up along the way.
Man that all sound like a pain! I totally feel for you. My stomach valve stays 1/3-1/4 open pretty much all the time due to the weak valve and the hernia. I wish they would just fix one of the 2. Hopefully things don’t start getting worse for either of us. It is awful enough.