Hello, I’m new to this group, but I can see that there is a lot of experience here. There are a lot of unhappy experiences out there and I might say that I’m one of them, but I naturally want to avoid making it worst. I’ve got a very unique situation and have encountered a variety of problems in getting diagnosed and establishing a path back to health. Since this group is focused on GI, I will also, but my issues actually involve neural and vascular as well. I’ll try to be as specific as possible, but I must apologize for such a long narration. It may not be obvious, but this is a highly condensed version of the issues that I have to navigate.
I have been motivated by an periodic abdominal just to the right of the solar plexus. It can wax and wane over months. It can also be a mild nusance or drop me to my knees gasping for breath. My gallbladder was deficient and was removed 2 years ago in the hope of relief, it did not help.
I had a nissen & highly selective vagotomy about 15 years ago. It was successful up to a couple of years ago and it has now “slipped” and appears to be hanging on the esophagus below an enlarged hiatal hernia. I’ve recently underwent the gastric emptying test that showed a delayed action on the first hour. i.e. gastroparesis. If this is a complication from the Nissen, I don’t know, but in my opinion a pyloroplasty will most likely make things worst. That leaves my main question. My options are 1) do nothing 2) Nissen redo 3) Nissen unwrap. I’m tempted to go with the unwrap, but I would like to find out what to expect.
Working out from that issue, right next door, just a inch or two away, I have a celiac stenosis, which fits the classical pattern for MALs (Median Arcuate Ligament syndrome). This can inhibit blood flow to the digestive system. Unfortunately, completely unrelated to me, there is an academic dispute regarding the legitimacy of the syndrome. It turns out that Stanford, where I have been evaluated, does not consider this to be valid condition. If being caught up in this argument wasn’t frustrating enough, their vascular surgeons have completely invalidated their “objectivity” on a unrelated matter.
About 10 years ago, I came down with a idiopathic peripheral neuropathy with a devastating fatigue. To control the pain, I’ve been seeing a pain specialist that has kept me on a moderate dose of methadone. At my first appointment with Stanford’s vascular department, they immediately classified me as a drug abuser and things went downhill from there. They concluded that methadone is only used for heroin addiction and could not understand why I was taking it since I never even tried heroin. That physician offered no help in any form, no testing, no useful referrals, and then wrote a false narrative that included some actual facts, but altered the context and sequence of events. Just to be sure, he phrased it to make me sound like the classical abuser, not an actual patient. In short, he did everything in his power to keep me from decent medical care.
Obviously, I’m still angry about this. Especially since that report has played out in following visits where I was subjected to very abusive treatment from the very doctors that are suppose to help. However, I persisted and finally got a bit of my message out, but even so, the bariatric surgeon that I’m presently talking too can only offer an opinion on the digestive side of my case. Obviously, however, the digestive tract cannot function properly without an adequate flow of blood. The laparoscopic entry is identical for both the Nissen and MALs. I’ve already had my gallbladder out in an attempt to alieviate the abdominal pain, so I don’t want to break this out into multiple surgeries. But, then Stanford does not subscribe to the MALs diagnosis and apparently doesn’t consider a celiac stenosis to be a serious condition because it is “widely patent”, meaning other vessels feed the organs. Except I’ve had GI troubles for over 35 years, at any rate, though, Stanford’s vascular department has lost all credibility for me. Which means my surgeon can only focus on half of my issue and leaves me in a position of having to go “shopping” for a diagnosis. It is a dilemma.
All this leaves me with a great deal of uncertainty as to how to find help. That is why I am considering to just have the Nissen unwrapped and learn to deal with the reflux. I already have the Barrett’s esophagus anyhow, which is what the original surgery was intended to prevent.
Well, thanks to anyone that can provide some insight into these problems. Hope to hear from you all soon.