Anyone have experience with gastric volvulus?

@saolson, I moved your question to the Digestive Health support group. Gastric volvulus is a rare condition resulting from rotation of the stomach beyond 180 degrees. May I ask how this was discovered for you? What has been suggested to correct the issue and symptoms?

Dear Colleen, Thank you for replying. I apologize for the delay in replying to you. Are you able to help me make an appointment? I am desperate for reduced pain.

On 10/30/23 a gastroenterologist at MNGI performed my 7th endoscopy since 1/15. Her report says: *Stomach Comments: Shape of the stomach was atypical, with level of the pyloric channel appearing to be "above" the level of the GEJ on retroflexion, with extreme J shape, and possible diaphragmatic h ernia at the pylorus/duodenal bulb. Difficulty navigating the scope ni this near 360 degree rotation, only allowing for D2 extent reached, with visualization to majority of D3. that she was unable to advance the scope through the nearly 360-degree rotation."

I have not been officially diagnosed with gastric volvulus. Recently, a stomach surgeon opined that I do not have any indications of a "true volvulus" Earlier he expressed that during exploratory surgery he untwisted my stomach from being rotated to the LH-side. Could I have partial or an intermittent volvulus? While rare it happens at least according to web-searches anyone can find.

Taking Lyrica, oxycodone and Tramadol every day is no way to live.

A friend of mine recommended the names of two Dr's. they described as outstanding. They are Dr. Andrea Wagner; GI Department (?) and Dr. Luis Tapias Vargus.

In this journey I am where I am at after following the steps that are written in research paper written by Dr. Seth Sweetser. Is it even possible that I could be seen by Dr. Sweetser?

As-is, I would see whomever was available. The best way I can describe my pain is like hell on earth.

I hope that the pdf documents arrived.

Colleen, I apologize for such a lengthy reply. Plus, is this series of "posts" seen only by you and I?

@saolson, Thanks for the detailed reply. However, I removed the attached PDFs because they contained personal identifying information. Messages posted on Mayo Clinic Connect are public and seen my members following the discussion.

If you would like to seek the opinion of Mayo Clinic experts, you can self-refer or ask your doctor to submit a physician referral. Here's how to get started http://mayocl.in/1mtmR63

Dear Colleen, Thank you for your help. I got carried away sending so many files and so thanks for securing them.

I contacted Mayo's appointment office and arranged for Allina to forward whatever records they have. Over the last 10-years I have pursued just about every option. I have followed the recommendation of every specialist to a T. Two of the procedures resulted in a catastrophe. 1). During spinal fusion surgery to resolve my abdominal pain I experienced a spinal cord injury and could not walk. 2). I underwent diagnostic injections into my abdomen that required 2-months in order to identify the problematic T9 nerve. That was exactly what Mayo Dr. Seth Sweetser had described in a "paper" on AWP/ACNES that he ahd written. Unfortunately, the surgeon severed 2-nerves and they were the wrong nerves.

I hate to say it but in 2015 a gastroenterologist at Mayo diagnosed my issue as, "functional dyspepsia". I followed his recommendation and tried drinking 1/2-ounce of McCormick's peppermint oil 3X-daily which darn-near blistered my throat. Then he diagnosed me as having pelvic-floor-dysfunction. I passed the sphincter-test though and we moved on.

NO Dr. has considered, "intermittent gastric volvulus" even though every one of 7-endoscopies exposed concerns with the anatomy of my stomach. Some of the reports were very alarming. I realize that "intermittent gastric volvulus" is not common. I have no explanation why I might have it. I was seriously injured in car-racing accident during which the car barrel-rolled many times.

Collen, Have you EVER heard of gastric volvulus or even more importantly, "intermittent gastric volvulus"? if there is ANYTHING you can do to facilitate my appointment I will be forever grateful. Thank you very much on a Sunday evening. Stuart Olson

Dear Colleen, To clarify I have not been diagnosed with volvulus. On 10/30/23 a gastroenterologist at MNGI reported: “From what we can tell, your issue is primarily related to the anatomy of your stomach.” “Stomach Comments: Shape of the stomach was atypical, with level of the pyloric channel appearing to be "above" the level of the GEJ on retroflexion, with extreme J shape, and possible diaphragmatic hernia at the pylorus/duodenal bulb. Difficulty navigating the scope in this nearly 360-degree rotation only allowing for D2 extent reached with visualization to majority of D3.” Following that I was advised to have a Spinal Cord Stimulator implanted which did not help. On 9/13/24 a surgeon at Allina performed, "exploratory laparoscopic surgery w/possible gastropexy." He expressed that he, "reduced the angulation"of my stomach. For 6-days afterwards my pain was all but gone. For the 1st time in 10-years I felt, "normal" and picked apples, worked in our garage, rode bicycle and golfed 14-holes pain-free. When the pain returned on day-7 the surgeon opined that it was because my stomach, "rotated back to where it was". Upon on-office visit he said that I did not have, "a true volvulus", that he "could not explain why" my pain went away and that I should seek a new pain Dr. All of that has happened recently. I forgot to say that throughout all this whenever I have tried to jog or walk quickly (since my paralysis I can no longer jog) it feels as if there is something loose inside my abdomen. As-is it seems logical to investigate, "intermittent gastric volvulus".