Median Arcuate Ligament Syndrome (MALS)

@ukmalsman hi thank you for your response… I live in Nashville. I have just reached out again today for the second time to my gastroenterologist. Asking that they do a specific ultrasound test for the MALS.
My doctors have all been very ‘sympathetic’… some even calling me at 7-8-9 o’clock at night just to let me know that they have reviewed my tests, are so sorry but they have looked at my films over and over and over and they are dumbfounded and just have no explanation for me. They are always very apologetic. They say they know that something is wrong but they do not see anything on the films showing them a cause for my issues.

Still, all the sympathy in the world doesn’t help me.

Although my PCP has personally witnessed my stomach issues, still he does not know what to do...Except to send me to specialist doctors. And I understand that. At least he does that. My PCP before him had me come back for bloodwork every three months for two years before I finally just broke down and lost my mind in his office and begged him to please not make me come back after three months because I could not handle the pain for three more months before doing just another round of bloodwork.
After that I found another PCP who has at least made the effort to find good specialists for me to see.
But You just think that somewhere at some point somebody would recognize this and know what’s causing it.

Hi @bachsmom

I am amazed at the difference and you say your primary has witnessed this. I really can't believe they have not done much to help you. There was a discussion a little earlier between me and @kanaazpereira regarding the diagnosis of MALs (5 Oct 2018). Kanaaz was saying that MALs is a diagnosis of exclusion; basically going through every other known possibilities and even then they sometimes don't consider MALs. MALs is generally stumbled upon or if a primary or consultant is familiar with MALs they will look for it. My diagnosis took ten years and even then it wasn't the gastro consultant who suggested the angiogram it was an immunologist. My argument was that instead of the lengthy process where I and I believe many others had several operations like an appendectomy or cholecystectomy, before they actually look for MALs. A healthy appendix and gall bladder were removed probably for nothing. It would be better for all if after the usual check on the digestive system they then do an angiogram to check the arteries before they start removing organs. You are a severe case and you have time restraints too so don't settle for anything less, you have been through every possible test. Now be specific, ask for a gastroenterologist and one that has dealt with MALs. Look further down this post, @schaepekaren mentioned Dr Hsu from Connecticut is the most noted or look on the MALs PALs Facebook page where they list Consultants around the USA.

Of course we on the Mayo website are here for you. If you say which part of the USA you are in maybe someone reading will be able to suggest a consultant. As for food, look further down at my recommendation Food for MALs sufferers. If you try it eat in small portions and not every day. I can only manage 1 breakfast bowl full every 3 - 4 days, but its better than nothing. If you haven't eaten for a while all the healthy brown, green and red food will be out of your system. Remember anything white is alright! Stay away if it Red, Brown or Green!

Good luck and keep us posted.

Mark

Thank you Mark, yes I was very slender growing up and just gained weight when I was pregnant. Now I am down to 108. I haven’t been that weight since high school and I am 50 it is kinda disturbing to me. I will ask about the nerve bundle when I see my surgeon at the beginning of Dec. thank you for all your advice and yes I have many questions and will check in regularly. 🙂

Hello. I turned 50 in May.. over the past two and a half years or so I have seen 37 doctors and 19 surgeons. I have had over 1.5 MM dollars in tests and procedures performed to try to figure out why I have pain when I eat that radiates around to my back. My stomach also swells to the point that I can’t even stand up or walk. There are occasions when I stay laying in the bed for days at a time and cannot get up. The pain and the nausea are just too debilitating. When I’m starving and finally just have to eat something I will take a Linzess so the food immediately gets emptied back out of my system. I have tried every diet that there is. I have tried vegan, vegetarian, macrobiotic,… Paleo, if any of them, seems to have worked a little bit for me as far as being able to eat without as much pain. I have just stumbled upon this disease and have made a call to my gastroenterologist. I think it is important to recognize that so many times when tests are done, blood work is involved. Normally when blood work is involved, they ask you to fast. The problem with that is, the pain happens when you eat, not after you have fasted. Flareups seem to happen right when you eat so you really either need to be eating or have just eaten when a test is performed. I know it’s difficult, but there is an alter sound that can be performed right after you eat that shows this artery and what it’s doing. So it can be done…That’s what the doctors don’t seem to get. And I don’t understand why. Here’s a photo of my swelling. And what I look like when I don’t eat, or when there is no swelling..Actually normal. I will go from the normal photo to the others within minutes of eating. Or sometimes just drinking a bottle of water. I can at times literally watch my belly grow with each sip. And my doctor has seen it happen too. Obviously I can’t take a picture of my pain but let’s just say I had to retire from my job,at 49, because I couldn’t go to work on a daily basis, or with any regularity because of this situation. I currently cannot keep a job. I am in bed most of the time And when I get up I can only move around for a short time before I have to lay back down. I cannot do any kind of strenuous activity or even hardly any activity at all without the swelling & the pain. I used to run 10 miles a day and work out two hours a day. Now I can’t get out of the bed.
I have COBRA but it will run out in about a year. I’m hoping someone will find something soon.

Hi @103196 LionessCA
If you have read through the whole post it can be quite daunting and scary to get the diagnosis. The problem most have is what treatment to have or getting heard. There is some research on it but sadly not enough. My early stages were severe Abdominal pain with Gastritis and GERD, there were other symptoms but they were the main ones. I posted a recommendation for food below which you should read. When you see your surgeon make sure you ask about the Celiac Plexus nerve bundle. My theory is that some are born with it, however the ligament can slip down in some people late on in life and start causing problems after a few years. I'm guessing that if you were born with it you were naturally very slim throughout your youth no matter what you ate. The longer you leave it untreated the worse the symptoms will get and by what my surgeon has said the harder it is to treat effectively.

We are all here for you so don't be afraid to ask any question.

Mark

Hi @annief

Great post and very encouraging. I've read a good majority of this post and no one has ever mentioned Mental Health. I have been suffering 10 years with the first 3 years barely leaving my home. I will be upfront and say after 5 years of horrendous pain my mental state was very poor. Even with wonderful family and friends it stripped me bare. Not being able to work was the worst for me, missing family weddings and other celebrations just added to the depressive state. It was the fact that I couldn't travel especially in a car which grounded me. People never saw me as depressed because my character is totally different; I can honestly say I was on the edge. I am a natural problem solver and could see where I was heading so endeavored to solve the problem, so I started writing. I've written 3 novels so far and not looked back since. I'm not published in any way, but the research, planning and writing keeps my mind busy and my closest friend loves them. I actually love writing when I am not suffering from brain fog. Back then I was afraid to talk about my mental health with anyone, but it is something that needs to be open. Posting on here has helped tremendously, It was suggested I sign up with MALs PALs on Facebook which I have. But in all honesty I'm probably one of the very few people who doesn't use Facebook, it's a privacy issue! For all those who are suffering in silence, don't be afraid to get involved on either website. I can categorically say they are a good bunch here on the Mayo website.

Thank you all.

Hi @helenannmarie55
I am right there with you, the pain between the shoulder blades is truly awful. I've not been on this website 3 weeks because I was suffering so much. I also get chest pain, this time I couldn't even let the duvet rest on my chest!
For such severe pain I can only recommend you ask you doctor to prescribe Buprenorphine Transdermal patch, it's what I use. Have they referred you to a pain specialist? Everyone reacts differently to pain meds, the pain specialist will be able to try different methods of controlling your pain, they also perform celiac plexus blocks.

I thought it would be fun to share a photo with you all. So to help with my over all well-being I have taken up western pleasure riding lessons once a week. Let preface this with the activity is strenuous and does trigger mals pain- for me exercise brings on pain. I do believe it has to do with my underlying vascular disease along with scar tissue from surgery, however with that comes a great escape from all pain. That one hour on the horse, connecting and learning has been invaluable. Staying active is so difficult when you are malnourished and feeling unwell. I do have times when I have to cancel lessons due to symptoms. And when I miss a week I find that the rest of my week is difficult. Just wondering what activities you all are able to tolerate, what brings you joy and escape from the chronic symptoms?

@imalady2 I saw that Grey’s Anatomy episode! Oddly, for the last month or so I have been suffering with some very strange symptoms, including severe, radiating pain just under my sternum, a heavy, overstuffed feeling in my abdomen. and diarrhea. I almost went to ER several times. Then I’m watching that Grey’s episode and, low and behold, they describe my exact symptoms! ((Altho I think they over-simplified the solution based on the surgery and recovery experiences I’m reading here!) I assume a gastroenterologist would be my next step? Or would it be a vascular surgeon?