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Median Arcuate Ligament Syndrome (MALS)
I am looking for other patients that have been diagnosed with Median Arcuate Ligament Syndrome. Although it is caused by compression of the celiac artery many people experience abdominal pain after eating, diarrhea, food avoidance. Usually the first doctors they see are GI doctors. It is a diagnosis that is made after everything else is ruled out. I am curious if anyone else has had surgery?
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Hi Kari, it is great to see you with your horse!!! I haven't been on in awhile. I have been focusing on the dysautonomia and all of that. It is frustrating. However, I am beginning to have my MALS pain again. I did have narrowing again in Aug of the Celiac, but sma was good so we decided to wait and see how it goes since I have all this other stuff going on. I go the end of the month for another scan. I may move it up.UGH!!! Well keep riding, it seems to do good for you because you look great!! Jill
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1 ReactionFOODS TO EAT FOR MALs SUFFERERS
Hi @jdouglas Glad to hear you were lucky with the diagnosis, with hope your symptoms will subside and disappear altogether. I lost 28lbs in a month when I realised food was the cause of the pain. It took another 2 months for me to work out what I could eat. The rule of thumb for me is Anything GREEN BROWN or RED is a no go; all the foods that your digestive system finds hard to digest. So basically most healthy food for me causes severe pain. When you eat these foods the pain doesn't start straight away, they accumulate in your system, that's when the pain gets real bad.
So for a while stay away from
Brown bread, Bran, pulses, potato with skin on etc
Green beans, dark leafy greens especially spinach, kale, chard & collards, sprouts, green vegetables & fruit like peas, asparagus, broccoli, grapes & celery etc, it's the chlorophyll that we can't digest.
Red meat especially BEEF and red vegetables, beetroot, chicory, radishes
It may seem extreme but its does work with the following suggestion,
Pretty much all white foods are safe like cauliflower, parsnip, potato no skin, pasta and easy cook soft white rice. Chicken is great but don't eat whole pieces; make sure it is minced and flake your fish. I never had a problem with spices as long as you lightly spice it.
Ask your doctor to prescribe you something like or Fresubin juice which has a high caloric value, it is fat free, fiber free and lactose and gluten free. Fortisip shakes are another but they do contain lactose and gluten. They are great for increasing your daily calorie count. I would also change to lactose free milk and go for the full fat one. If you are a hot chocolate drinker I suggest Milo; It contains a lot of vitamins and minerals plus it's high in calories too.
I can only eat 1 meal every three or 4 days and even then it's only a breakfast bowl size, but I am a sever case. I have however managed to halt my rapid decline in weight by sticking to the rules above. I would suggest you eat a meal every other day and build it up from there on a fortnightly basis.
I wish you a speedy recovery,
Mark
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1 ReactionHi @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.
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1 ReactionHi @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.
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1 ReactionHi @imalady2 Sorry to hear you're having problems. Your first port of call would be a Gastroenterologist, they will want to rule out other causes like your Gallbladder. If you really believe you could be suffering from MALs then read through this post and take note of the doctors that have been suggested. It's just that if you end up with a doctor that that knows little about MALs you will have a lengthy diagnostic process.
Hi @kariulrich
A woman after my own heart! I enjoyed horse riding especially as a means of getting around when I traveled to other countries. I would have taken it up if I had not become so ill with MALs, Instead I find my escape in writing novels, to which I can do anything my heart desires!
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2 ReactionsNo pain specialist yet. Thank you that will be my next step.
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1 ReactionI would buy your books I think I would relate
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.