Median Arcuate Ligament Syndrome (MALS)

@worriedmom18 I understand what your daughter is going through, I also have POTS and EDS... so when your hit with symptoms from all three and you cannot sort them out it can be so overwhelming. I had worked with a nutritionist during a difficult time and what she suggested is eating a carb with a protein, then carb with veg/or fruit and keep doing that every hour or every few hours. I could tolerate carbs a bit better than anything. So I would have 1 cracker and a little peanut butter, then try a couple bites of toast and 1 mini carrot , cereal was good if it was dry, occasionally I could have milk. I know it is difficult when you are on a liquid only diet... my heart goes out to her. I was able to tolerate gummy vitamins at times. I know how fast our bodies become malnourished and it is so difficult to bounce back from, even after surgery. It sounds like you have found a great vascular surgeon, I found my surgeon the most support and understanding when it comes to MALS. Please know I am thinking of you and your daughter. Much love!

Wow, I am so sorry Kari that you haven't been doing as well as you had hoped. My daughter has had a consultation with a vascular surgeon who has a clinical interest in MALs he was very gentle and discussed all the possibilities and risks. We saw him just a week ago and he said he would call us after conferring with his colleagues at the university. My daughter has POTs and EDS as well as MALS. We have another consultation with a different set of surgeons also who also claim familiarity with MALS on 10/3 . She isn't doing well and even moving to an all liquid diet she still suffers in pain for hours per for each time she consumes any nutrition. The only thing that doesn't do that thankfully as of yet is water. This is a very frustrating and terrifying illness and the emotional consequences it having on my daughter emotionally is nearly as devastating as the physical implications. Anyway thank you for updating us on your condition and I hoping you find relief soon.

@jmmb @coffeelatte @worriedmom18 @joyful1 @atjmoney @bpayne @cornishrex @carolina58 @azbluebird @sarah1317 @jamorris9 @bree11 @lmtuska @evrose23 @lisa01 @malsman @artistgma @evileye00 Hi everyone, I wanted to touch base and see how everyone is doing? any tummy troubles recently? I know this can really affect your quality of life and for me MALS has become a chronic health issue. Curious if anyone has had complete resolution from their symptoms? As many of you know I have had 2 MALS surgeries and about a month or so ago had a celiac block. The celiac blocked helped about 60 percent, but now my symptoms have returned and postprandial pain is now more intense. Has any seen any research or heard of any case studies as of late?

Well coffeelatte, I did have some stomach issues. I was told IBS and I found out about the MALS when I had severe pain that nothing would help so I went to the er hoping they would just give me morphine or something but dr. insisted on ct scan. Good thing, he noticed narrowed arteries and told me to see vascular surgeon. I still didn't think anything, pc at the time referred me and boom, said needed open surgery right away.As far as SIBO, I really don't think so. I never had the symptoms that I do now. The severe boating, gas either constipation or diarrhea. I never had the weight loss associated with MALS either. My surgeon said I didn't show typical signs. My surgeon at the time was chief of Vascular dept. at University of Az Medical Center in Tucson AZ. He then moved to Texas and I got a new one, Dr. Karou Goshima. I really like her. She did the stents. The malabsorption and bloating was all after the surgery. The difference was I was gaining weight and not at the right pace. I was even on a no sugar diet with my naturopathic dr. since I was feeling so horrible and kept gaining. I did have significant stress at the time. My dad passed, I was taking car of my mom with beginning dementia, and my 2 sisters teamed up against me since I was POA..didn't want to help me with my mother, left everything to me, but wanted control of money, which wasn't much believe me. Any way, it was the worst 2 1/2 years of my life. Tore us apart. I practically rose my sisters kids to which killed me. Any way I digress, it is still pretty painful for me, but my drs said the stress of being a caretaker, dealing with my sisters, and my illness was to much for my body. I gained 40 pounds. I wasn't even eating!!!! I couldn't recognize myself. I was 118lbs before surgery. Before my surgery I would eat from a big bag of peanut M&M's, then some oreos and even frozen yogurt and not gain anything. I was like that my entire life. I was 47 when I had the surgery. I did start walking and lost weight and changed my eating. I haven't been able to walk the past few months but continue to loose weight. I am not eating enough calories, everything hurts, afraid to eat, you know....I have lost 35 pounds, so I am happy about that. If I only had strength to work out a bit and tone up would be nice, or even just get back to walking, but just to exhausted again. I don't want to loose to much more weight, I am just trying to keep my eating habits, but I don't even know what to eat anymore......Wow sorry long answer for simple question, and 2014 was open surgery, 2015 stents

Wow jmmb, I have not heard of compression from the diaphragm. I was only aware of compression by the ligament. That must have been a very rough surgery. How long ago did you have it done and who was your surgeon(s)? No wonder you feel it is hard to take in a deep breath at times. I do not know but you may have developed some scar tissue that causes issues. Do you think you had SIBO before your surgery? Did you have any symptoms of SIBO like malabsorption, weight loss, bloating?

worriedmom and atjmoney I feel for your family and your daughters. They are to young to be dealing with this, they should be enjoying life. Hopefully since they are so young they will fight this early in life and not have to deal with it later in life when it can be more challenging. I thought about them as I was replying to coffeelatte saying it is comforting to know we aren't alone, but not fair for such young girls to have to deal with this....Just my thoughts are with you all

coffeelatte, I had an open surgery for what they found when they went in was that my diaphragm was compressing my celiac and superior mesenteric arteries. Tests showed they were severely compressed and needed surgery right away, but they didn't know it was due to diaphragm till they went in. I guess it is very unusual I am told. Then a year later I had stents put in each artery since they were narrowed again significantly. I was to weak to go through another open surgery. Sibo usually does develop from some sort of abdominal surgery....I've done all the testing too, and like I said, like you the malabsorption issues. I did show some weird things on my gastric emptying; small intestine empties faster than average, then the other numbers were right at the low mark, but they didn't say anything. I will ask about that when I go back to see gi doc. I really don't need another issue, but I feel like they just look inside the box, if something isn't flag they don't look at the numbers, but some of my numbers are up and down and 1 point from the low , things like that. My naturopathic dr. I went to who first diagnosed the sibo said that to me. She said they need to look at the whole picture and person. Not everyone fits into a perfect box. Anyway I just wonder if I'll ever feel 'normal' whatever that is again. There are good days, my "good" days which a "normal" person would feel crappy, you know what I am saying and then those you don't want to get out of bed. It is nice to talk to someone who gets it. Sorry you have to deal with it too, but it is comforting to know we are not alone, if that makes sense.....

Jmmb, you will have to remind me what surgery you have had. I have not had surgery for MALS release but 13 years ago I had a hysterectomy and my gall bladder removed at the same time and I have had GI problems ever since. I feel the SIBO may partly be a result of scar tissue from those surgeries. For me, the compressed arteries were an incidental finding after many of the tests I had came out normal (gastric emptying, abdominal CT, liver MRI, endoscopy, colonoscopy, blood tests) except for the fat malabsorption test, breath tests for SIBO and fructose intolerance, B12 and D. The compressions are significant so when I went to Cleveland the GI doctor could hear the bruit through his stethoscope. I struggle most with the GI symptoms. I do feel a tightness and pressure in my sternum but I can live with it if it does not get worse. It does not make it hard to take a deep breath. If it does, at least I don't have to go through all the testing and various doctors again. I know what the problem is now. I agree with you about the GI's advice to go ahead with the surgery. I won't do it unless a vascular surgeon says it is time.

I wish I was familiar with the Scottsdale physicians, unfortunately I am not. I hope someone on here knows of someone. Have you looked on the MALS Pals Facebook page, they have a list of peer recommended physicians, but I believe the list is vascular surgeons.

I forgot one question. About the tightness and pull on artery. Sometimes , more often than not, I feel like it is hard to take a deep breath, like I can't get enough air in. It's hard to explain. when they asked me if I have shortness of breath, I tried to describe this, and they (Mayo GI) just said no that's nothing. I wonder is it anything like that type of feeling? I do have a lot of scar tissue. I can't bend to my left side to well. It feels like there is a big brick or something blocking me.