Far far away, Approximately 8/2009 -Symptoms began while deployed in Iraq.

Shortly after promotion, and before our arrival at our duty station I began to lose my appetite. Believing it was stress, I kept it to myself and carried on. A few months in, not feeling abnormally stressed I still had early satiety and forced through the “not wanting to eat” and sometimes id get nauseous. I maintained a weight over 160 and consumed mass gainers, it began to become increasingly harder.  I eventually sent it up the chain of command and there was nothing much that could be done on such a small base. It didn’t keep me from being mission capable and I maintained excellent physical fitness.

6/23/2010 – ENDOSCOPY GI SPECIMEN A. DUODENUM B. GASTRIC BIOPSY C. RANDOM COLON BIOPSY – Roseburg Doctor

No Findings.

(*No “VA Notes” in medical records during 2010-2012 to review as there are in future years. Not sure if they had a different record keeping system at that time.) We have since requested all records. 

5/10/2011 – CT ABD/PEL W/ & W/O CONTRAST – Doctor not listed in medical notes.

No findings.

(*No “VA Notes” in medical records during 2010-2012 to review as there are in future years. Not sure if they had a different record keeping system at that time.) We have since requested all records. 

No information

(*No “VA Notes” in medical records during 2010-2012 to review as there are in future years. Not sure if they had a different record keeping system at that time.) We have since requested all records. 

6/5/2013 – BRANDON CALLED: “Pt called stating that he would like an appt with his clinic to discuss issues he’s having with his stomach.” 6/5/2013 – RN: “call returned to vet.  Asking for provider appt, says he might know what is causing his stomach problems and wants to talk to provider. Appt made for 7/1/13.”

7/1/2013 – Primary care checkup – PCP

“He relates recently a friend due to Webb search and described to him the symptoms of mesenteric ischemia which he relates matched his symptoms exactly.” “explained to the patient is very unusual to see mesenteric ischemia in someone as young as him with no risk factors for atherosclerotic disease however if he had congenital narrowing of a mesenteric artery it would be possible. We’ll arrange for mesenteric artery Doppler study. If unremarkable could consider gastric emptying study but again that would not explain pain brought on by exercise. Patient did relate when one of his friends who is a former medic purposely exercised intensely with him to initiate the pain and then listen to his abdomen he had increased bowel sounds which would be consistent with an exaggerated parasympathetic response to eating and exercise.” PCP requested Abdominal Duplex Ultrasound.

8/14/2013 – Abdominal Duplex Ultrasound – Doctor not listed in medical notes.

“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.”

10/3/2013 – BRANDON CALLED: “Pt called requesting to speak to his nurse. I schedule for f/u to discuss Ultrasound results.” 10/4/2013 – RN: “Patient notified that abdominal ultrasound was inconclusive and that the radiologist has recommened MR angiogram or CT andiogram. Roseburg radiology is able to perform the MR angiogram and (PCP) will order it.”

11/4/2013 – MRA Abdomen – Doctor not listed in medical notes.

“Focal 50% stenosis at the origin of celiac axis.”

1/6/2014 – BRANDON CALLED: “Patient had an abdominal MRA and states he has never really discussed the results or the next steps that are needed.” 1/6/2014 – RN: “left message.”

4/24/2014 – Endoscopy – Roseburg Doctor

“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.” “PCP to order duplex u/s of celiac axis. The patient would likely benefit from referral to a vascular surgical expert even if it requires fee basis.”

5/28/2014 – BRANDON CALLED: “Patient called requesting to speak with his nurse to find out the results of his endoscopy and would like to know what the next step.”

6/12/2014 – BRANDON CALLED: “Pt received a letter saying his Ultrasound was canceled and he would like a call to discuss what he should do now if he’s not having an Ultrasound?” 6/13/2014 – RN: “Phone visit scheduled.”

6/18/2014 2:15pm- BRANDON CALLED: “Pt states that he never received scheduled telephone appt from PCP.” 6/18/2014 – RN: “Appt rescheduled”

6/20/2014 – VASCULAR E-CONSULT – DR in (Portland VAMC)

“Isolated, one vessel stenosis is not a cause of mesenteric vascular symptoms. Patients who have chronic mesenteric ischemia usually have all 3 mesenteric vessels affected, usually with at least 2 occlusions. Arcuate ligament syndrome is a described entity, but not universally accepted. I personally don’t believe it exists. I would suggest more common etiologies, e.g. biliary disease.”

8/11/2014 – BRANDON CALLED: “Patient called requesting to speak with his nurse concerning what is going on with his dental and also what the next step would be to address his abdominal pain.” 8/12/2014 – RN : “Tried several times by phone, left message. Has Dental appt 8/19 and PCP entered Non-visit consult regarding abdom pain.”

6/15/2015 – BRANDON CALLED: “Patient called for Annual Exam and this writer did not note any labs ordered. Please call if patient needs labs.”

6/24/2015 – Primary care checkup – PCP

“Patient presents today for followup on chronic abdominal pain” “25 year-old male with a history of chronic abdominal pain which he’s had since December 2009 while stationed in Iraq. He was diagnosed with IBS tried on multiple medications for IBS without improvement. In June of 2010 he underwent upper and lower endoscopy which were completely normal including biopsies for 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. Patient has continued to have the pain which has not increased in frequency, severity or duration. He relates he gets it after just about every meal typically 5-10 minutes and lasts a half hour longer if he eats meat. Patient relates even if he drinks more than 16 ounces of a protein drink it will set off his abdominal pain. The nausea is intermittent. Patient also noticed during exercise if he gets his heart rate 140 he will set off the nausea and abdominal pain.” “chronic abdominal pain which occurs postprandial and with exercise, exaggerated parasympathetic response to eating and exercise,extensive workup to date without etiology determined, we’ll plan on performing upper GI with small bowel follow-through”

9/3/2015 – UPPER GI AIR CONT W/SMALL BOWEL – Roseburg Doctor

“Normal upper GI and small bowel follow-through. Since this has been a long-term problem with negative findings so far, unusual sources of abdominal pain might be considered such as Meckel’s diverticulum and celiac disease. CT examination of 2011 showed no vascular abnormality. Technetium abdominal scan looking for Meckel’s diverticulum and consideration of celiac disease may be helpful.”

9/25/2015 – BRANDON CALLED: “My stomach got worse after the CT scan. I have little to no appetite and I cannot keep anything down. I also have increased pain.” 9/25/2015 – RN: “Appt made next week to evaluate decreased appetite.”

10/5/2015 – BRANDON CALLED: “Pt states that he is still having abdominal pain, increased on 09/09. Pt’s appt was canceled by the clinic. Pt was scheduled for next available appt on 10/28. Pt would like to speak to the nurse.” 10/7/2015 – RN: “Patient states he does not want to wait until 10/28 to address his abdominal pain. He is not able to eat and his weight is down to 125lbs. Phone visit scheduled this week.”

10/9/2015 – PCP Phone Visit – PCP

“Called about increasing abdominal symptoms. Patient relates his appetite has continued to decrease he virtually has no appetite patient relates within a few minutes of eating he starts to get abdominal pain and nausea he continues to push eating through the meal he will get vomiting. Patient relates his weight has decreased further he’s currently at 125 pounds. I asked about continued symptoms with exercise he relates he has not been exercising recently.” “Continued postprandial abdominal pain- Again symptoms are suspicious for mesenteric ischemia although he does not fit the prototype patient for this type of disease. He did have MRA of his abdomen 2 years ago which showed 50% stenosis of the celiac artery. Discussed with the patient repeating MRA of the abdomen and then depending on the results either referral to vascular or to GI in Portland for further evaluation. Patient will present next week for laboratory test to ensure adequate renal function for contrast study.”

10/19/2015 – NUTRITION DIETETICS CONSULT – Eugene Nutrition doctor

“Veteran with complicated situation and no clear diagnosis for his significant abdominal pain symptoms. He is concerned that in the past week or so his pain has intensified. He comments that he is somewhat afraid to eat for the pain that he’ll experience. This affects his quality of life in many ways. When he returned from Roseburg for testing recently, he had extreme pain and had to wait it out at a freeway rest stop for over 2 hrs before he could drive again. He seeks a diagnosis and treatment for his condition.”

12/11/2015 – Primary care checkup – PCP

“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.” “Awaiting consultation with Portland GI.”

1/8/2016 – PCP Phone Visit – PCP

“Patient still has his abdominal issues and as yet there has been no response from Portland GI.” “We’ll place consult to Roseburg GI since no response from Portland GI.”

1/11/2016 – Gastrointestinal Consult – Roseburg Doctor

“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.”

1/14/2016 – VASCULAR E-CONSULT – Portland Doctor (Portland VAMC)

“While we are happy to see Mr Donovan, he needs testing done prior to us seeing him the test that he needs is a Mesenteric Duplex Ultrasound exam of his mesenteric vessels. VAPORHCS does not perform this test, so you will have to send it out from Roseburg. Once you have the results and get them scanned into Vista imaging, please enter a new consult and we will schedule him into clinic.”

2/1/2016 – CONSULT-RADIOLOGY/NUCLEAR MED – Roseburg

“MRI imaging completed per radiologist protocol. Patient screened by a level II MRI personal, no contraindications found.”

3/1/2016 – BRANDON CALLED: “Pt called requesting to speak with the nurse regarding medications and health update.” 3/1/2016 – RN : “He also asked about his vascular consult.” “NON VA consult entered for the required test.”

4/22/2016 – Mesenteric Ultrasound – Central Oregon Radiology Associates

4/26/2016 – RN  notified Brandon of the following:

“Please relate to veteran vascular surgery’s review of his mesenteric Doppler study. I have reviewed the images from the mesenteric Ultrasound done by Central Oregon Radiology Associates on 4/22/2016. This is an excellent quality study, I agree with their interpretation that it is basically normal. I do not believe that his post-prandial pain is related to his mesenteric arterial system.”

4/25/2017 – Posted detailed symptoms and timeline on Facebook looking for new ideas of conditions to bring to primary care doctor to consider/rule out. At this point, we were under the impression that all of his tests over the years had come back with no findings.

5/24/2017 – Primary care checkup – PCP – Brandon brought the write up of his symptoms that was posted to Facebook, and list of ideas he received to try and rule stuff out.

“I explained to the patient that the majority of diagnoses that were listed on his differential of those to consider head are deep and ruled out or were not consistent with his clinical presentation. I recommended rather than randomly performing extensive testing which increases the likelihood of false positive every refer him to GI for further evaluation and if recommended further erected testing. Patient declined referral back to clinical nutritionist.” “Most recently he had abdominal ultrasound/visceral study which showed no evidence of hemodynamically significant luminal narrowing of the visceral vasculature noted was mild incidental finding of arcuate ligament compression of the proximal celiac which was highly unlikely be contributing to patient’s postprandial pain.” “He presents with a list of differential diagnosis that he obtained as suggestions from others including apparently some physicians he’s been in contact with that include everything from diabetes-induced neuropathy, inflammatory bowel disease, parasites, allergy disorder and chronic intestinal pseudoobstruction.”

-Brandon requested his write up be sent to Roseburg GI ahead of time for when he receives next consult.

6/13/2017 – Gastrointestinal Consult – Roseburg Contracted doctor, 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.” “Schedule EGD. Refer NVCC for CTA. If CTA confirms celiac stenosis refer PORTLAND GI FOR CONSULTATION.”

6/23/2017  –   Endoscopy – Roseburg Doctor

“Please see Dr. Whitman’s consultation dated 6/13/17. There are no changes. Interestingly, I saw the patient in 2014 and had the same assessment. I discussed with the patient that the NVCC consult for imaging had been d/c. The patient does not want his scan here as the VA has continually misdiagnosed him from his point of view.” “Given the impressive weight loss and cachexia and the opinion of a second gastroenterologist, it really appears to be median arcuate ligament syndrome. The patient feels he was misdiagnosed by previous imaging studies and is requesting an outside facility due his CT. I told him I would re-instate the consult placed by Dr. Whitman.” “Await biopsy results labs, reinstate CTA NVCC consult as above f/u with Dr. Whitman, GI clinic in three weeks. rTC placed.” ”Notifed Dr. Whitman that NVCC consult has been declined by ACOS and the CTA will need to be ordered here. Dr. Whitman saw the patient in clinic.” “I was thinking more about your case and I think we should also screen you for adrenal insufficiency. I am going to order some testing for you and you’ll need to contact the lab (some of the tests will be fasting). You will then have a f/u with Dr. Whitman. Per our discussion just now, I have ordered your CT angiogram for Eugene, just call and confirm date/time with Eugene. You will need a lab for that and I have ordered that in addition to the labs for your adrenal work up (for possible adrenal insufficiency).”

*** This Dr.  made sure Brandon was provided a document to take home that indicated her findings of celiac compression.

6/26/2017 – Primary care checkup – PCP

“Patient was seen in consultation by GI and it’s felt that his abdominal pain may be related to median arcuate ligament syndrome causing celiac axis compression.” – “Abdominal pain-? Celiac axis compression syndrome-has a repeat CTA ordered.”

6/30/2017 – BRANDON MESSAGED: “The VA people denied Dr. B__ (request for outside va consult, what is the way to fight that? I want answers already and to be done with this pain. She gave me hope and id like to have a fresh set of eyes look at this issue. not the same vascular people that said nothing is wrong. It has to be the celiac artery compressed or the ganglion nerve cell cluster compressed. Its been nothing else, and this is the last thing that fits the symptoms.”

6/30/2017 – RN  left voicemail.

7/2/2017 – BRANDON MESSAGED: “For the stomach, I’ll be scheduling an adrenal test in Eugene to rule out 1 more thing that it is not. (Brandenburger’s request) also I will be scheduling a ct angio in eugene because I learned you have one and its not worth screwing my back on a long drive to Roseburg. I’d still like to have it done outside for a second opinion, (So did Whitman and Brandenburger) I know Gerondale has been reading up on Celiac Compression/Median arcuate ligament syndrome (MALS) can you have him look up Celiac ganglion block? it’s a injection into the nerve cluster there to see if that temporarily stops the pain, if it does they know at least that nerve needs to be operated on.”

7/14/2017 – CT ABD/PEL W/ CONTRAST – Lisa Brandenburger

“No CT evidence of superior mesenteric artery syndrome. Stable mildly narrowed origin of the celiac artery.”

7/19/2017 – BRANDON MESSAGED: “With the results of the ct still showing mildly narrowed celiac artery, whats the next step?  Also can I get a copy of the scans and results so i cant send them to a MALS specialist for a second opinion since the VA doesnt want to approve one? how do i go about doing that request? Back to the celiac artery, even if the narrowing of the artery isnt enough, the ganglion nerve could still be the compressed. I’m obviously getting pain, early satiety and nausea. Who is the doctor that read the ct and gave the results? is it the same one that did it last time?” 7/20/2017 – RN Julie Brown: “I can’t tell who read the CT but you can come in a get a copy of the printed copy and the images on disc. The GI provider you are scheduled to see on 8/11/2017 at 2:00 should be able to tell you more about the next step.“

7/24/2017 – BRANDON MESSAGED: “Because lack of sleep and inability to move much I have done a good deal of reading up on Celiac compression and other related issues. In MALS there are cases of no celiac arterial compression but with a plexus block to the ganglion nerve cluster there was 100% pain relief concluding that it was an inflamed nerve structure. With the surgery to cut back the ligament they also can take out the nerve cluster. 90% of the patients out of 150 had complete pain relief and recovered completely. There is a specialist named Dr. Richard C. Hsu in Connecticut who we will be getting in contact with and sending my scans. My frustration and anger is not with you three, (Gerondale, Julie and Jamie) but with the system you have to adhere to. Back pain doesn’t help either, or malnourishment”

8/15/2017 – GI Consult – Daniel Whitman

“prior evaluation and work up post prandial abdominal pain and weight loss (documented less than 10 lbs past 1 year). Evaluation has shown with doppler US and CTA a narrowing of the celiac artery. I finding significant it may explain symptoms.” “Schedule gastric emptying scan. Referral to OHSC.”

8/24/2017 – Primary care checkup – PCP

“27 year-old male  presents and relates he still had the exact same abdominal symptoms he was recently seen by GI in Roseburg and has had a gastric emptying study done and the plan was to refer to Portland VA/OHSU GI for further evaluation.” “He does get nauseated throughout the day.” “Gastric emptying study pending. Trial of nausea medication to help caloric intake.”

9/12/2017 – BRANDON MESSAGED: “Final question, I had to cancel the gastric emptying appointment because of the distance and a bad sleep night, is the Eugene location capable of doing that study? Its not going to yield results as both doctors have said but its evidence that its not something…so i don’t want to reap the pain of driving down there if I don’t have to.” “I filled out the form deal thing for the records request and sent it in so hopefully they pull all the right files.”

11/6/2017 – GASTRIC EMPTYING SCAN – Daniel Whitman

No findings.

1/2018 – Made phone 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 the condition. Recommended he get celiac plexus block to help confirm nerve involvement with pain.

1/10/2018 – Primary care checkup – PCP

“Awaiting specialty evaluation by OHSU. He continues to have the abdominal pain he relates it tends to occur with less and less food he is eating now just once a day at nighttime he admits to anticipatory  pain at mealtime. He was approved to be evaluated by OHSU but has not yet heard about an appointment. We did make contact with the Roseburg choice nurse and received a number for him to call Tri West first thing tomorrow morning.”

3/6/2018 – BRANDON CALLED: “Patient called requesting to speak with his nurse to find out if the clinic had received paperwork from a Dr. Richard Hsu concerning his stomach.”

3/9/2018 – BRANDON CALLED: “patient called stating Dr. Hsu sent an fax sent to PCP. Patient states the information for care of stomach.  Patient states information was faxed to [number stated].  Patient states this is the number listed for Eugene VA fax number. Please call when available.”
3/9/2018 – RN : “Patient called to check on status of medical records being faxed from Dr. Hsu regarding his GI treatment. Informed that we have not received records. Verified that he was using the correct fax number. We will contact him when records have been received and reviewed. Verbalized understanding.”

3/13/2018 – BRANDON CALLED: “Veteran called requesting a return call as soon as possible to discuss if a fax has came through that he was having sent to the clinic.” 3/13/2018 – RN : “Patient updated on the status of fax. We have not received anything from Dr. Hsu’s office. Verbalized understanding. He will check with that office again tomorrow.”

3/20/2018 – GI Consultation – Laura Kading (OHSU)

“Brandon Scott Donovan is a 28 y.o. male with history of chronic back pain, who presents for evaluation of chronic epigastric pain & nausea which has been going on since 2009. He has had a work up by Roseburg, GI including endoscopies and these records will need to be requested and reviewed. Discussed case w/ Dr. Kelley who examined the patient. Given that other etiologies have been excluded, we recommend having his most recent CT scan re-read by OHSU radiologists to confirm the compression of celiac artery and to evaluate for any other pathology including chronic pancreatitis which could potentially explain his symptoms. If arterial compression is confirmed on re-read of his CT scan, we can refer him either to pain management for celiac plexus nerve block or vascular surgery for more definitive management.”

5/7/2018 – Primary care checkup – PCP

“Chronic abdominal pain which occurs postprandial and with exercise, currently undergoing evaluation by OHSU and in the process of receiving authorization to do celiac plexus block.” “He is being evaluated at OHSU. OHSU radiology did recently review CT scan from July 2017, CT Angio of November 2015 and MRA of November 2013 with the following impression: No finding suggestive of median arcuate ligament syndrome. No etiology to explain the patient’s chronic epigastric pain and weight loss. No chronic pancreatitis. Mild narrowing at the origin of the celiac trunk due to the median arcuate ligament is within normal limits. Celiac trunk does not have the “hooked” appearance typical for median arcuate ligament syndrome. Veteran relates the plan is still to proceed with the celiac axis block. He’s also been in contact with a surgeon in Connecticut Dr Hsu who apparently has extensive experience with this condition and surgical correction. After reviewing his scans he recommended proceeding with celiac axis block and if beneficial proceeding with surgery. We discussed the possibility of not being able to determine a cause for his symptoms. Veteran relates at the celiac axis block does not work he then will feel he is taking it as far as he can from a Western approach and would then be amenable to shifting gears to biopsychosocial approach to managing his pain.”

5/23/2018 – Pain Center Consultation – Chidi Ani (OHSU)

“This is a pleasant 28 year old male with a history of post prandial epigastric pain and a working diagnosis of medial arcuate ligament syndrome. He is referred to us for a celiac plexus block. We had a detailed PARQ of the procedure and he will like to proceed. We plan on performing a sympathetic block at the level of the splanchnic nerves.  We will not be making any changes to his medications today. In the event that this nerve block is successful in decreasing his pain while the local anesthetic effect lasts, it will serve as useful diagnostic information for future decisions to perform surgery. He is currently working with his GI team on surgical options.”

6/25/2018 – BRANDON MESSAGED: “Hey Jamie, So small update for OHSU. The GI department sent my to the Pain Department to get the Celiac plexus block. That doctor convinced my that the one he was going to do is less risky and does the same thing, Called the Splanchnic Celiac block. I took this information to the specialist over in Connecticut and he says while it can work and early in the discovery of treatment people got this but its less likely to work and give us a specific diagnosis(instead of numbing the 1 specific nerve thats inflamed the Splanchnic gets all of them). So i take this back to the pain department and they actually cant do it and sold me on the only celiac block they can do. They also currently have no idea where in OHSU or even if its done at OHSU so i’ve been transferred to 4 different departments in a never ending circle. The splanchnic also has more side effects for the 12 hours, that will make it hard to eat(such as diarrhea). I don’t know what to do to get what I need. They have the note from Dr. Hsu about the specifics of the procedure.” 6/27/2018 – Internal Response from Norbert Gerondale: “I feel like he needs to follow the advice of the specialists at OHSU as it is highly unlikely that the VA would pay for him to see the specialist in Connecticut.”

6/27/2018 – BRANDON MESSAGED: “Quote from Dr. Hsu: “A few had the Splanchnic nerve blocks early on. It would theoretically work if the medicine infiltrated to the base of the Celiac plexus. It’s not ideal, and not exclusive of the MALS diagnosis if it does not work. But it’s better then nothing.” I need the exclusivity, that’s the important part of that message. its been 8 years of guess work on wide range of all encompassing tests. I want this specific procedure. Also the Pain Management specialist said Splanchnic nerve blocks cause a lot of unwanted side affects, like relaxing of intestines and diarrhea. The OHSU specialist agree with this. They now are scheduling me for a Celiac Ganglion Plexus block but endoscopic approach. Which is the right block, regardless of approach. I just am figuring out if the drugs from the endoscopy will wear off in time for me to eat and exercise to reproduce the scenarios of pain and nausea. If i’m loopy, rubbery and nauseous from the endoscopy and bupivacaine has a short shelf life in the system i’m on the clock and eating and running while loopy, rubbery and nauseous isn’t helpful.”

7/9/2018 – BRANDON MESSAGED: “I’ve been told by 2 people, 1 medical professional and 1 prior patient that there is the ability for a case worker to help me with this OHSU/Connecticut/VA/MALS mess? making calls, appointments going up to bat ect. Have you heard of this and where i can go? The OHSU stuff is a mess, the doctor that was going to do the Celiac block through is now not doing it because:  “I did a lit search and this is case reportable ( I found one case of it being done)- I.e celiac block to treat median arcuate ligament syndrome which is a debatable legitimate cause for pain.” It’s not that he won’t do it but if it truly is that rare he wants a consult, a chronic abd pain consult and a 2nd opinion so they can assess what they think I really need. Unless; “If he has a surgeon that is ordering this test and willing to operate on him if the procedure works, then we can bring directly to procedure” I have Dr. Hsu’s office trying to contact OHSU and vice versa but I’m playing the middle man and it’s getting overwhelming. I know Tri-West won’t schedule the surgery before the block is even done, let alone going to Dr. Hsu but thats what I’m seeing on most all the other cases. They schedule the block and the surgery and if the block fails they cancel the surgery. Seems efficient but I know its out of the picture just based on what I’ve experienced with tri-west.” 7/10/2018 – RN Jamie Brandsness: “The Eugene VA does not have case workers.  Brandon, I am not sure what I can do to get them to do the procedure, I am at a loss, I know you are too.”

8/30/2018 – CELIAC PLEXUS BLOCK – Brintha Enestvedt

“A small amount of food (residue) in the stomach Duodenal deformity in D3/4 as described as above. Bilateral celiac plexus block performed. Report to Richard Hsu , in Stamford CT.”

8/31/2018 – BRANDON CALLED: “patient is requesting a call back to discuss a post hospital stay check up with his PCP.” 9/4/2018 – RN : “Discreet message left on voicemail requesting a return call to the Eugene VA Clinic and ask to speak to Nurse Monica.”

9/4/2018 – BRANDON CALLED: “Patient wanted to update PCP to let him know that the Celiac block worked and he was able to eat normally for 10 hours following the procedure. The injection has now worn off and he is back to his previous state of pain after eating. He has been in contact with the doctor in Conneticut and was told that he will need surgery to remove the end of that nerve to maintain the result. He stated that OHSU did the block “begrudgingly” and that they don’t have a surgeon that would be able to do the surgery on the nerve. He is doing further research at this point and will schedule a phone visit with PCP if needed.”

10/16/2018 – BRANDON CALLED: “Pt called to request a consult for “upcoming community care surgery”. Pt would like to meet with PCP.”

10/22/2018 – Primary care checkup – PCP

“Chronic abdominal pain-positive response to celiac plexus block has been recommended by both OHSU and Dr.Hsu who specializes in median  arcuate ligament syndrome to proceed with surgery which would involve celiac ganglionectomy and resection of the median arcuate ligament. Return to clinic after surgical correction. 28 year-old male  presents and relates he did undergo celiac plexus block at OHSU on 30th of August and had complete relief of his abdominal pain for about 10 hours before the anesthetic wore off. He was able to eat large quantities of food. The vascular surgeon that specializes in median arcuate ligament syndrome has recommended that they proceed with surgery. Specialist at OHSU have also recommended proceeding with surgery. He has continued issues trying to maintain his weight  which is now down an additional 5 pounds resulting in a BMI of 16.25.”

10/24/2018 – VA Administration denied community care request for surgery with Dr. Hsu. RN  called Brandon to relay the decision. She advised that he is being referred for a vascular surgery consultation with the Portland VA.

11/1/2018 – RN messaged Brandon: “Brandon, OHSU has been trying to get ahold of you. We have to go through the hoops to get anything done. If you could please call them at [number stated].”

BRANDON MESSAGED: “I also am trying to get a hold of you. I called the other day under their [Portland VA] instructions and still haven’t got any answers.  I’m also done jumping hoops, as  they are just as confused as I am. I need from gerondale and/or you specific answers on the reason the request for outside community care was denied. I need a specific reason why the VA is sending me to the portland VA. Not just to ‘see vascular’ but the stated reasons given to Gerondale to give to me. The Portland VA wants to do the surgery, they claim to have done a surgery like this before but up until now no one in the entire VA community has even considered MALS, I drove that home and sought out people that could actually answer questions. Right up till they did the injection the doctors were basically kicking and screaming that they didn’t want to do this. The Leading expert in the nation wants to do this surgery, and that’s who is going to do it. I am tired of wasting time seeing ego driven doctors that have a hard time approaching new subjects with an open mind. The Portland VA cant tell me why their doctors cant just speak with Dr Hsu or even why they need to physically see me. Also, if it falls outside of the 30 day window like the scheduler said it would it would be sent to community care….. see where this turns into a vicious cycle? Once I get answers I will call the Portland VA. 8 years of beating around the bush and jumping through hoops and I’m done with it. It’s pretty damn easy to recommend to play the game and jump through hoops when you can eat a full meal everyday without torture. I’m done going with the normal VA flow, i will get my surgery done by Dr Hsu.”

RN  messaged: “Brandon, This is what the denial states on the community care consult to Dr. Hsu: DNY-Community Care care request disapproved: DIS-Reason Service available at the VA. Alerting PACT, this consult will be cancelled per COS guidance as services  available within VA.  COS recommends IFC consult to PVAMC.  OCC RN  confirmed timely appointments available with PVAMC Vascular surgery  coordinator, [name stated]. I do understand that it has been a long, frustrating and painful 8years. We are doing everything we can to get you the help you need. I don’t know what else to do 🙁 ”

11/19/18 – VA Administration denies community care with Dr. Hsu for 2nd time. RN  messaged Brandon: “As for the community care consult. I looked today and saw that they denied the new consult. I called and asked why. I was told that there were a couple reasons. 1. There isn’t any evidence based information (not entirely sure what that means as there are consults in from Portland) 2. When they called and talked to Dr. Hsu office to ask for a CPT code (to bill) they said there isn’t a CPT code for the procedure. That there is another person seeing Dr. Hsu who is having the same issue through Medicare, with how to bill it and because there isn’t a code they cant do it. I understand that they cant bill a procedure that doesn’t exist in the code books, but I don’t understand why they cant find one if the procedure has been done before. That is why I’m not in billing, thank goodness. I don’t even know where to direct you from here. Let me know if I can do anything for you.”

11/16/18 – Ron Wyden’s office makes an official inquiry into Brandon’s case with the VA and is awaiting their new decision. The representative advised Brandon that both of the Portland VA surgeons(Amir Azarbal and Donn Spight) had noted their recommendations that he see Dr. Hsu.

11/16/18 – Brandon spoke with Dr. Amir Azarbal

This was one of the two surgeons he was referred to see for a consultation at the Portland VA. Brandon had prepared many questions but the surgeon advised he would note the consult request that he recommends Brandon be seen by Dr. Hsu due to his experience with this condition.