You have made a lot of good observations. I wish that I had more time to respond, but I will admit that my trust has taken a severe beating.
Member has chosen to not make this information public.
Member not yet following any Groups.
Member not yet following any Pages.
Hi john, thanks for your reply. The neuropathy has been a real pain, literally. Things are starting to go numb now, but laying in bed day after day with pulsating pain in your feet is not fun. It makes having a life very difficult and is a great source of depression, but I have been fortunate. About two months ago I discovered that I have a genetic deficiency that could be influenced by the supplement L-serine. This has been helpful for some of the worst aspects of the neuropathy, so I had been very fortunate indeed. I should clarify the conditions that precipitated the situation regarding the incident at the vascular clinic. Stanford is an educational facility, so I was first seen by something like an intern. Maybe he missed this lecture, but the only thing he knew about methadone was related to heroin addiction. After a brief consultation he left the room for about 5 minutes to consult with the head physician. They both came back in and the head physician started to dismiss me and to make accusatory remarks that clearly showed a problem. I suppose that he is not use to people calling him out on that behavior, but I’ve encountered this too often previously. It amazes me how physicians will zero in on methadone as though it was responsible for all of my conditions. Never realizing that it is the better of two evils. The association between pain and depression is incredibly strong. So giving free reign to the pain is to let my depression run wild. If I were to do that, then my very life would be in serious jeopardy. You have to do what you can to treat the depression, but that does little for the physiological aspect of chronic pain. Hopefully the neuropathy will fade into the background as the GI problems are now preeminent. Kind of like smashing your thumb with a hammer to stop a headache, but it is important to understand if these conditions are related or just playing off of each other.
Thank you for all of the references. It will take a that while for me to sort through them. If it is the vascular department that you are suggesting a second opinion, I have already done that. It was the first position that wrote a false narrative, and the second one followed suit. Going to a different institution is probably the better solution. For them to say that MALs is not a “legitimate condition” is nothing but hubris. It is fairly obvious that at some point the lack of blood flow will diminish function. So even though the vessels are widely patent, the need for a second source of blood supply would indicate that this is, from an evolutionary point of view, still a very important redundancy. So I wonder at what point do they think that treatment is necessary? I think that they are on the losing end of this argument.
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.