Help Veteran with MALS battling the VA
KEZI 9 News Interview with Bryan Anderson 12/13:
Interview with Rick Dancer 11/14:
A website was created for Brandon for anything he wants to share. Visit here for updates:
The public Facebook post to share:
Thank you for taking the time to hear this story. I’ve provided the most condensed version of events below.
Brandon is a 29 year old Veteran who served from 2008-2016 in the Army National Guard. While deployed to Iraq in late 2009, he started having some unusual symptoms while eating. The symptoms quickly got worse to the point that he was nauseous and in excruciating abdominal pain whenever he started eating, so much so that he would be hunched over in pain for 30-45 minutes no matter how little he consumed. He contacted the Veteran's Administration (VA) once he got home in 2010 and they began testing to determine the cause of his pain. Brandon underwent countless tests over the years and was told time and time again they all came back normal. However, we just found out that as far back as 2013 there have been multiple tests that indicated his celiac artery was compressed and we were never told about it because VA vascular doctors dismissed it. ￼
Here we are 9 years later, and he's still in pain whenever he eats. His weight has gone from 160 lbs to 109 lbs. He is malnourished and has numerous issues due to his current state. We finally found out about MALS (Median Arcuate Ligament Syndrome) in 2017. The only reason he has a diagnosis is because he sought medical advice outside the VA on his own with Dr. Richard Hsu (pronounced "shoe"), a MALS Specialist. Vascular Surgery is currently the only treatment. Both Brandon's primary VA doctor and a doctor he saw at OHSU have strongly recommended he have surgery with Dr. Hsu outside the VA, but VA administration has ignored their own doctors' advice and denied the request, because the VA has surgeons. However, both of the Portland VA surgeons Brandon was referred to after that denial have also noted in his file that he should be seen by Dr. Hsu since he has a lot more experience with this rare condition.
Our veterans deserve to have the most qualified doctors operating on them. This isn't the type of procedure you can simply do over when done improperly the first time. To this day, Brandon would not be diagnosed through the VA had he not sought help on his own with Dr. Hsu.
We're requesting help either with sharing Brandon's story to help bring to light issues within the VA, or with donations to help cover the surgery and/or cover additional medical and travel expenses.
If you prefer to donate by check as opposed to GoFundMe, please send a message through this page by clicking the envelope next to Team Donovan and we can send you P.O. Box information.
***IMPORTANT - PLEASE READ***
So many friends and family and people we have never met have told us not to wait on the VA to do the right thing and to do this now. So we decided that Brandon’s health is the top priority and we have to do everything we can to try and get him better once and for all, as soon as possible. He’s been through enough. We don't know if the VA will ever change their decision and we can't afford to wait it out.
We completely understand if you choose not to donate knowing there's a chance the VA could end up changing their decision and covering the surgery before we could raise enough money to pay out of pocket. Based on recent events, we don't believe that will happen. However if that situation occurs, donations will first go towards travel costs for the family to get to Connecticut for the surgery and the required 2+ week stay in the area and then towards any costs associated with his recovery during the months following. If there are additional funds left after that, we will attempt to make refunds at that time based on GoFundMe's restrictions to the most recent donors if possible.
"MALS Awareness" Facebook Group:
Brandon's story in his words:
My name is Brandon Donovan and I’m a 29 year old veteran from Oregon with MALS. To sum up my situation as concisely as possible; I’ve been dealing with debilitating stomach pain and nausea any time I eat (any amount) or exercise for 9 years. After years of going through any and all tests through the VA and being told each one came back normal and just trying to live with it, my health had deteriorated to a point where I had to push the VA to try to figure it out again, doing repeat tests early 2017. My weight was around 160lbs before this began and is now at a critical 109lbs.
I was finally presented with the possibility that I might have Median Arcuate Ligament Syndrome (MALS) mid 2017 from a Roseburg VA doctor performing a test, which matched up with my symptoms perfectly. Apparently, she was the same doctor that performed this test in 2014 and mentioned the celiac artery compression back then in her findings and was astonished to find out that nobody in the VA had followed up on it. (She was just the doctor to perform the test and could not make any official diagnosis.) It is incredibly rare to have symptoms from this, so much so, that a great majority of doctors are either unaware of this condition altogether or flat out don’t believe it can cause any issues. Because the Roseburg VA vascular expert that reviewed the test results didn’t believe I could have symptoms from this, they did not diagnose me with it or recommend any follow-up for it. There are instances where months and years go by without any accountability after they send me to various tests or other VA doctors, no follow up, no next steps, just forgotten. I would have to go in after “waiting to hear from someone” to initiate more investigations. I sought medical advice outside the VA from a MALS specialist (Dr. Richard Hsu in Connecticut) who looked at my test results and I was relieved to hear that this could be my problem and it can be fixed, although it is a major surgery. I pushed to have a celiac plexus block procedure performed through the VA at OHSU at his recommendation which helped to confirm the diagnosis of MALS. Finally, with a thorough recommendation letter from OHSU and a request from my primary care VA doctor both strongly recommending I have MALS surgery with Dr. Hsu, the request was denied by VA Administration. The reason given; “This service is available within the VA.” They now recommend I be seen at the Portland VA for a vascular surgery consultation.
After 9 years of deterioration, exhaustion, and pain, altering what should be a significant time period in my life figuring out my life-long career and enjoying time with friends and family… The VA, refuses to allow me to have life-changing surgery outside of the VA with someone who is actually highly familiar with this rare condition and has performed MALS surgery for over 190 patients. The same VA that didn't have the experts to diagnose me for years and never would have had I not sought Dr. Hsu’s advice and pushed them to have the celiac plexus block for months. The same VA that will only follow-up with your debilitating condition if you continue to have the strength and will to push them to, that wouldn’t look into a condition at all because they didn’t believe in it, that would just leave me high and dry to die if I gave in because the system is flawed. That VA is now saying, trust us...
This condition is extremely rare. I can’t emphasize that enough. The surgery needs to be performed by a MALS Specialist, not just any vascular surgeon, in order to ensure that it’s performed correctly. VA administration has continually ignored their own doctors medical advice and put patients health on the line. I'm not the first one. I now have to fight the VA to overturn their decision or pay for the surgery on my own. We weren't going to setup a GoFundMe as it's highly uncomfortable asking for donations, especially such a large amount. But we can't afford to wait to come to this last resort, hoping and praying the VA will do the right thing, as that hasn't been their track record. If you can't donate, please believe me when I tell you that sharing my story through the Facebook post link at the top is truly incredibly helpful. I have sent my story to various government officials and news outlets. If anything can come from sharing my story, I'd like 3 things:
1. I’m hoping that shedding light on this issue may help put pressure on the VA to overturn their decision and approve my surgery with MALS Specialist, Dr. Richard Hsu.
2. I want the VA to be held accountable to the people they're supposed to be serving. I don't want another Veteran to be forgotten and let slip through the cracks because they needed to initiate continual care, or communicate for all the doctors after being sent somewhere for a test.
3. MALS awareness is extremely important as this is so rare and non-familiar even to many doctors. I'd love for someone out there that has similar symptoms to look into MALS with a Specialist, and potentially find relief from the pain.
Firstly, thank you so much for your support. It was overwhelming and much needed. I wouldnt be here right now without it. I wrote a long overdue update on my blog
Just wanted to put a brief update up.
Brandon had the MALS surgery with Dr. Hsu on Feb 27th and everything went according to plan.
Brandon will put an update on his website FiredandForgotten.com as soon as he is able to in regards to how he’s feeling and what he has been dealing with during this recovery. I will link to the update on here once that is up. It is a really tough recovery especially the first 2-3 months after surgery and can take many months after that up to a year to feel completely normal and healthy again. Thank you for your support!
It will be about a 3 week trip. We’re praying that there won’t be any travel issues with snow and most of all that his surgery is successful! ❤️
We have progress!
When a social problem is inherently negative, people involved tend to clear back and give it space. They watch what they say and proceed with caution. But when that same negative issue starts to go forward and turn positive, people tend to want to be a part of it. It happens with anything just like it started to happen here. We started to get misinformation. There was miscommunication and information dissemination out of order. Just more hands in the cookie jar when things are looking good.
Like Michael Scott from “The Office” telling Pam that the branch is closing when it wasn’t confirmed yet. Spoiler alert, they never closed.
I unwound the mess and it ended with me speaking with the Director, directly.
Today, I got confirmation from the Director of Community Care that the Regional VA has now Pre-Approved the Consultation AND the Surgery. I am officially getting this surgery!
Before, it was just the consult and NOT the surgery. Requiring flying back home and waiting for yet another determination on whether or not I’d get the surgery. The Interim Director of the Roseburg VA made it clear at that time that the consult did not guarantee approval for surgery. Now, it is.
There are still a whole lot of unknowns. We do not have a date yet, or even a general idea of when. We don’t know what we will be financially responsible for, but at least it’s not 80 grand! There is still a lot we don’t know. This was not approved through conventional means. It is not going through TriCare as it would be through the normal channels, hence all the unknowns. The recovery will be slow, and we don’t know if there will be health repercussions from having this condition untreated for so many years. We still don’t have answers on why this ever happened in the first place and why I had to go to such great lengths to get care. I won’t be letting that go, that was my youth that was taken.
Unfortunately, this news doesn’t excite me, while it doesn’t discourage me either. To me, it’s long overdue and should have happened a long time ago. It is another step to getting things right again. I may be excited when I finally have no pain when I eat. But that has yet come to pass. I will continue to remain grounded, as other veterans are facing the same issues and not being heard.
That doesn’t mean you can’t be excited in my stead. Without all of you supporting and loving people, I wouldn’t be getting the care I need. I did the hard part, stripping my ego and dignity for all the world to see. But you made it heard and not go in vain.
Lately, it seems like so much of what you see online is meant to stoke outrage at some group of people versus ourselves because that’s what gets shared and that begins to warp our perspectives that the only good people out there are these within our own group. But this shows that across any age or gender or socio-economic background, across the whole religious spectrum through middle America and along the coast, there are a lot of good people everywhere and not only that, but they constitute a majority.
Sure, there were some arrogant people that tried to incite negativity back on us, but it wasn’t the majority. People shared, people donated their time in helpful ways, people donated their money and sent us encouraging letters. They didn’t do this for Facebook likes or because they knew someone was watching. They did it because it was simply the right thing to do and I think that’s amazing and something worth remembering. That stuff keeps me happily grounded.
Thank you, and stick around, its not over yet.
To receive updates, please check out FiredandForgotten.com