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robatk17
@robatk17

Posts: 4
Joined: Mar 06, 2017

Failed Nissen w/gastroparesis & possible MALs

Posted by @robatk17, Mar 6, 2017

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.

REPLY

Hello @robatk17,

I’d like to welcome you to Connect, and thank you so much for sharing your history, and all the difficulties you’ve encountered while trying to find some relief! As you will see, there is a whole community here, ready to provide some answers and support.

I’d like to introduce you to one of our Mentors, @kdubois who can give you some valuable insights about her Nissen experience; you may also wish to view this discussion in the Digestive group:
Nissen Fundoplication reversal: http://mayocl.in/2lTNbGo
There you will meet @myskye, @tgirl, @katmandoo, @SherryD, @gregoryd, @carolynlivingjaks, @cowbow1997, @peck1944, and @kozlo52.

Please meet @kariulrich, who has a current discussion on MALS; you can read all the posts here, http://mayocl.in/2lB3exF, and feel free to tag @lisa01, @lmtuska, @jamorris9, @sarah1317 for more information.

@johnbishop, @jimhd, @magg, @medic7054, @rabbit10, @edgar, would you be able to shed some light about methadone, it’s presumptive use, and link to idiopathic peripheral neuropathy?

@robatk17, perhaps considering a second opinion may be beneficial for you; how are you coping with the reflux? Have your healthcare providers given you any explanations for the negative feedback?

Hello @robatk17, I’m really sorry to hear that you have had so many different difficulties and health problems. It is a great thing that you are being your own advocate and pressing for answers. I have idiopathic small fiber peripheral neurpathy and have had it for 20+ years. I am fortunate that I only have numbness in my feet and a little above the ankles now. I have never had any pain associated with it which is fortunate. I also have polymyalgia rheumatica that does give me some pain in the arms, shoulders and hands. It had been in remission for over 6 years but reared it’s ugly head this past August.

It seems ridiculous that they classified you as a drug abuser for methadone. Not sure if this will help but there is some test data for methadone and treating neuropathy on these links:

https://www.ncbi.nlm.nih.gov/pubmed/16225176
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3086960/
https://www.ncbi.nlm.nih.gov/pubmed/25479151

Hoping you find some answers soon…

John

@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.

@kanaazpereira

Hello @robatk17,

I’d like to welcome you to Connect, and thank you so much for sharing your history, and all the difficulties you’ve encountered while trying to find some relief! As you will see, there is a whole community here, ready to provide some answers and support.

I’d like to introduce you to one of our Mentors, @kdubois who can give you some valuable insights about her Nissen experience; you may also wish to view this discussion in the Digestive group:
Nissen Fundoplication reversal: http://mayocl.in/2lTNbGo
There you will meet @myskye, @tgirl, @katmandoo, @SherryD, @gregoryd, @carolynlivingjaks, @cowbow1997, @peck1944, and @kozlo52.

Please meet @kariulrich, who has a current discussion on MALS; you can read all the posts here, http://mayocl.in/2lB3exF, and feel free to tag @lisa01, @lmtuska, @jamorris9, @sarah1317 for more information.

@johnbishop, @jimhd, @magg, @medic7054, @rabbit10, @edgar, would you be able to shed some light about methadone, it’s presumptive use, and link to idiopathic peripheral neuropathy?

@robatk17, perhaps considering a second opinion may be beneficial for you; how are you coping with the reflux? Have your healthcare providers given you any explanations for the negative feedback?

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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.

@johnbishop

Hello @robatk17, I’m really sorry to hear that you have had so many different difficulties and health problems. It is a great thing that you are being your own advocate and pressing for answers. I have idiopathic small fiber peripheral neurpathy and have had it for 20+ years. I am fortunate that I only have numbness in my feet and a little above the ankles now. I have never had any pain associated with it which is fortunate. I also have polymyalgia rheumatica that does give me some pain in the arms, shoulders and hands. It had been in remission for over 6 years but reared it’s ugly head this past August.

It seems ridiculous that they classified you as a drug abuser for methadone. Not sure if this will help but there is some test data for methadone and treating neuropathy on these links:

https://www.ncbi.nlm.nih.gov/pubmed/16225176
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3086960/
https://www.ncbi.nlm.nih.gov/pubmed/25479151

Hoping you find some answers soon…

John

Jump to this post

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.

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.

@robatk17 You are a complicated case. Having MALS is a controversial diagnosis, especially when you have other diagnosis, that will only make it more difficult to treat and cure. In your case, much like mine it is difficult to say what is Mals and what is my other diseases. Try not to discount the physicians too much, I am sure they are doing the best that they can given your situation. I know it it frustrating and there are times when you get angry. I sure have. You already know you are the your best advocate, and as far as treatment and options each of us are different. You are not text book case, no one is. MALS is a legitimate condition that really takes it toll. There has been very little awareness in what encompasses MALS and how it affects patients daily lives. I am so happy you posted here! We need more patients to be open honest about the obstacles we face, otherwise we will not move forward in improving our quality of life, Take thing day by day, keep a diary of doctors, symptoms, procedures…. it is a full time job just doing that. Know you are not alone. Keep talking through all this, that is why we are here! Your Mals friend, Kari I would be more than happy to try an answer any questions you have about MALS and if I do not know the answer, try a direct you to the appropriate person. Looks like you have a team of people on here already! This is awesome. Thank you again for posting.

Hi,Debbie here.I just had my nissian Fundplication wrap redone on July 6,2017.I have been telling my surgeon and Gi doctor for 3 1/2 years it was too tight and ablot of issues .Well finally went in and reversed it to a loose wrap .So far everything has been going great .No more tight complctions and discomfort i had all time in chest .While he was doing it realize it was starting to colapse and that s why i was having more and more issues my food was getting stuck.I am keeping myself on liguid diet for at least 6 months to make sure all heals well and no issues.So pleased with the reverse …My surgeon was especially pleased with my results so far ……

Hi @deb1987,

That’s wonderful to know! Thank you so much for the update.

Hi, @deb1987. It’s always good to hear positive reports. It’s unfortunate that the doctor didn’t listen to you 3 years ago. I feel blessed to have a team of doctors who listen to me and believe me, and who take action. The exception might be the neurologist, who tends to focus on one issue and not explore any possible related problems.

Jim

Thats exactly what my surgeon said .How he was very sorry didn’t listen to me in the first place .He extremly sorry he kept listening to
my GI doctor who would listen to her parrtner who kept saying no to going in and reversing it to a loose one .It was also cause he was so sorry cause he was told their was something else wrong .We found out from my surgeon referring me to his gi buddy that i have esphogus spasms and thats when he said ok lets go in and reverse it to a loose wrap.Keep fingers crossed keep this well .
Glad you have such good doctors ..

@deb1987

Hi,Debbie here.I just had my nissian Fundplication wrap redone on July 6,2017.I have been telling my surgeon and Gi doctor for 3 1/2 years it was too tight and ablot of issues .Well finally went in and reversed it to a loose wrap .So far everything has been going great .No more tight complctions and discomfort i had all time in chest .While he was doing it realize it was starting to colapse and that s why i was having more and more issues my food was getting stuck.I am keeping myself on liguid diet for at least 6 months to make sure all heals well and no issues.So pleased with the reverse …My surgeon was especially pleased with my results so far ……

Jump to this post

@deb1987, simply said… YAY! Thanks for the update!

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