@robatk17 thank you for posting here. I’m hoping you can find some answers to your questions, and some comfort in what I’m about to write. You’ve certainly been through a lot and have multiple things to take into consideration. I’ll try to address as much as I can.
If this issue is bothering you enough to post on here, I would certainly address the issue, but you may need to keep advocating for yourself and at a different medical center. I feel that no one should ever have to “settle” with their health.
Regarding the Nissen, I just had a Nissen done at Mayo – Rochester last October, and I wish I had done it a decade before. My sphincter no longer functioned, and they fixed my 4cm hiatal hernia. I have no GERD now, I can eat normally again, and I can sleep laying down like a normal person again. It has enabled me to completely stop taking PPIs, H2 Antagonists, and antacids. I assume that if you have the Nissen undone versus redone, you will have to take some of these medications, which despite what many doctors advise and prescribe, were not intended for long-term use (i.e., years and years and years). These medications can also inhibit the liver enzymes that your body uses to metabolize other medications, which will cause your body to not properly-metabolize them. And I believe that you will also have a fairly significant GERD issue since there is already a hernia with the Nissen. Before my Nissen, I used to wake up with partially-digested food that had traveled up to the top of my esophagus, and I would wake up coughing and choking on it. You don’t want to aspirate this stuff into your lungs. GERD can also cause asthma.
With that said, if you have the Nissen redone, I would ensure to go to a thoracic surgeon who has ample experience with Nissen fundoplications and also with correcting them.
Regarding the MALS, if Stanford doesn’t feel it is a legit condition, what do they think is going on with you? (My frequent stressors at my home medical center have been doctors who figure out what they think isn’t wrong with me, but they take no further steps to figure out what is wrong with me. This is actually why I took myself to Mayo.) I would definitely get a second opinion from another high-caliber institution.
As an aside, I have many doctors at Mayo in many different specialties, and I have never had anyone treat me in the manner that it seems those vascular specialists treated you, which has affected the opinions of other physicians there, as well. You didn’t go there asking for more drugs; you went asking to fix a medical problem that in itself is a lot to deal with on its own. (My mom and daughter have peripheral neuropathy, so I can somewhat understand.)
Don’t apologize for being angry; I absolutely understand as I have been there myself and still feel anger toward my former doctors, but it is getting better. What two of my home medical centers and 20 doctors weren’t able to figure out for 12 years — ultimately telling me that there was nothing wrong with me — Mayo Clinic figured out in only the first six months I went there. Ends up there were a ton of things wrong with me, many undiagnosed and some actually caused by my home doctors.
Mayo’s doctors have helped me with one very important thing: I’m learning to trust doctors again. It can happen for you too, once you meet the right people.