All day my wife and I have sifted through 700+ pages of medical records. Below is a factual timeline of tests done, quoted comments given by different doctors inside the VA that would have lead to an earlier discovery if brought to light. If there were accountability and communication I may have had a good quality of life and my 20’s back.
It is not all of the comments, tests, failings and troubles of the VA its only those that we felt pertained to the discovery of MALS. We don’t have 2010-2013 yet. (long gaps in the timeline between dates were often a result in no one contacting me or trying to help)
12/2009 – Symptoms began while in Iraq.
6/2010 – Began various tests with no results.
8/2013 – Abdominal Duplex Ultrasound
“Celiac axis velocity at one point is found to be elevated at 310 cm/sec. This may be a reflection of celiac axis stenosis greater than 70%. However in a young patient this usually would not be from atherosclerosis but rather possibly a compression syndrome. It could be artifactual. Celiac axis stenosis per se is often not a cause of postprandial abdominal pain though, so it’s an indeterminant finding relative to the patient’s current symptoms. If further imaging evaluation of the mesenteric circulation is needed consider obtaining an MR angiogram or CT angiogram.”
11/2013 – MR Abdomen
“Focal 50% stenosis at the origin of celiac axis.” Results reviewed by vascular expert who determined this would not cause Brandon’s symptoms.
4/2014 – Endoscopy – Dr. Brandenburger
“The history is VERY suspicious for celiac artery compression syndrome. Given the severity of the symptoms and the classic history it is worth pursuing a w/u.” “The patient would likely benefit from referral to a vascular surgical expert even if it requires fee basis.”
12/2015 – Primary care checkup – Dr. Gerondale
“Chronic abdominal pain which occurs postprandial and with exercise, exaggerated parasympathetic response to eating and exercise,extensive workup to date without etiology determined, awaiting consultation with Portland GI. Only positive finding is CTA and MRI showing 50% stenosis of celiac axis.”
1/2016 – Gastrointestinal Consult – Dr. Brandenburger
“I remember this patient. He needs to see a qualified, experience vascular surgeon. The history is so indicative of this celiac axis syndrome (median arcuate ligament compression) that he needs actual evaluation by a vascular surgeon. His symptoms of post prandial abdominal pain, the exact same pain with exercise and now weight loss are compelling. If it requires a fee basis consult to an expert in the field that that’s what needs to be done. My impression was that the patient does not have irritable bowel syndrome as a cause of his symptoms. To treat him for something he does not have and overlook a more serious condition with a possible cure is not helpful. I did search his VISTA progress notes and I don’t see that anyone from vascular surgery has documented in the patient’s chart. I think it’s important for him to have a face to face interview with a surgeon so that his mental state can be assessed by the doctor. My impression of this young man was that there is a physical cause for his symptoms and it was not due to anxiety, etc.”
4/2017 – Posted plea on Facebook looking for new ideas for symptoms to bring to primary care doctor to consider/rule out. At this point, we were unaware of ANY findings in previous tests and had not heard of MALS.
5/2017 – Primary care checkup – Dr. Gerondale
In June of 2010 he underwent upper and lower endoscopy which were completely normal including biopsies for H. pylori and celiac disease. He’s also had CT of the abdomen and repeat upper endoscopy as well as duplex ultrasound which showed questionable mesenteric stenosis. Patient had MRA which showed up to 50% stenosis of the celiac axis. Consult was placed to vascular surgery who did not feel that this was significant or would cause mesenteric ischemia.
6/2017 – Gastrointestinal Consult with Dr. Whitman
“EGD and colonoscopy 2010 normal. Doppler US, MRA and CTA in 2015 all noted a degree of celiac artery stenosis which was judged not to be clinically significant. This has not been reevaluated of followed by a specialty service at RSB VAMC.” “Chronic meal related abdominal pain with associated weight loss is consistent with celiac or mesenteric vascular insufficiency. Celiac vascular abnormality has been noted on 3 different imaging modalities but not further pursued. Although rare syndrome the clinical presentation is consistent and I feel requires further evaluation.”
6/2017 – Endoscopy – Dr. Brandenburger
“Given the impressive weight loss and cachexia and the opinion of a second gastroenterologist, it really appears to be median arcuate ligament syndrome.” – This doctor made sure we were aware of this condition and the possibility that it’s causing Brandon’s symptoms since we were never informed before and follow up was always halted due to a vascular expert denying it as a possibility.
1/2018 – Made contact with Dr. Richard Hsu (MALS Specialist) who looked at Brandon’s recent test results. He advised Brandon that he does have the anatomy for MALS and his symptoms match. Recommended celiac plexus block to help confirm nerve involvement with pain.
8/2018 – Celiac Plexus Block
Finally got into OHSU through the VA to have celiac plexus block performed per Dr. Hsu’s recommendation. Doctor admitted not wanting to do this procedure but only was because of Dr. Hsu, minutes before Brandon was put under anesthesia. -Procedure worked. Brandon was symptom free for 24 hours after procedure.
10/2018 – Brandon was denied request for MALS surgery with Dr. Hsu.