Median Arcuate Ligament Syndrome (MALS)

Wow coffeelattee, we are so similar....I have heard of the regiments for sibo and one week a month is one of them. That was one of my biggest problems, getting someone to follow up and see what else after a round of them. I finally got a prescription company to get me the xifaxim for $35 a month and a $90 annual fee. These are for meds that are continuous. My insurance wouldn't cover it and then when I got on Medicare, which is horrible in Arizona. If you are on social security disability you can't get supplemental insurance. Stupidest thing I ever heard of. Obviously I'm sick if on disability and not working, how am I suppose to afford medical care.....anyway I wont get going on that....I had to pick a prescription plan separate from medicare and most didn't cover it. A few that did the copay was $600 for one round of antibiotics. No way I could do that especially when who knows for how long. So now I have a bunch in my medicine cabinet waiting to use. My last gi doc said to take a round again, but why waste it if there was no one to test me right after and follow up. She was moving and I was moving and going to Mayo. I was hoping they would, but doesn't look that way. I don't know how they don't see how it is all connected, the GI and arteries especially when they are the arteries to the stomach!!! It is so frustrating. Aren't you tired of being your own dr.
As far as surgery, I would go by what the vascular surgeon says, not the GI. Plus if GI knows you have sibo, that should be treated regardless of surgery or not. It is interesting about the collateral blood flow by alternate circulation. I spent so much time on sibo research I disregarded anything else with my arteries. Plus who wants to think anything else with them. I could never do another open surgery, at least not yet, but my surgeon said it is inevitable. Just a question of how long the stents last..
I'm sorry but you may have already told me, but did you have any surgery on your arteries at all yet? I developed sibo, well at least serious symptoms I didn't have before, after my surgery.

Jmmb, I totally agree with you. Knowing I have two arteries that are as compressed as mine is very nerve wracking to me. However, in meeting with both vascular surgeons and the general surgeon, all three said I have developed collateral blood flow. It is their opinion this is what is giving me enough blood flow, but not optimal. I understand this collateral blood flow to be alternate circulation around the blocked arteries by nearby small blood vessels. I can feel the tightness and pull of the median arcuate ligament if I take in a really deep breath and try to expand my ribcage as far as possible. I also can feel it when I do the back stroke in the pool. It feels so tight and hurts when I have stretched it. When I first went to Cleveland Clinic, I had an appointment with a well known GI doctor. He first sent me to an interventional cardiologist. When I went to see him, he did not feel I should have a stent placed because he said the ligament could crush it, move it, or tear the artery. He called in a second interventional cardiologist who said the very same thing. They referred me to the vascular surgeon, Dr. Parks. He is (was) the only vascular surgeon at CC doing the MALS surgery. I just received a letter informing me he has taken a position in another country so I will have to wait and see who will replace him.

As for the SIBO, I researched it until I was blue in the face. I am very familiar with Allison Siebecker's work and her website. I listened to many of her youtube videos when I was desperate for help and to keep my hopes up. For me, the antibiotics were critical. I was so low in B12 that I was put on a prescription for them along with vitamin D. I will have my levels checked again next week when I see my PCP. My B12 was so low (under 200) that my doctor wanted to do shots, but I wanted to see if the tablets would work. I don't think they have because I am so exhausted there are no words to describe it. I have felt this way for over a year now. It has to be the MALS and SIBO. I dread SIBO being a chronic problem for me but I suspect it already is. My GI doctor where I live wants me to do one week of antibiotics every month. I may give it a try. The GI doctor in Cleveland totally disagrees. He wants me to have the surgery right away. I asked him what my percentage was that it would help the GI symptoms that I deal with and he said 10%. I said would you do that huge surgery for a 10% chance of it helping and he said yes. I am not so brave.

Hi Kari, I am in need of a good gastroenterologist, and a general doctor in the Scottsdale area. I am new to Scottsdale, and do not know anyone to get these names, and referrals. Please let me know a.s.a.p. with some names, and hopefully phone #'s.

Thanks so much!

J.P.

@coffeelatte thank you so much for your sharing. We are very similar. I have to be honest 2 arteries blocked at that high a stenosis is concerning. I can understand they may be concerned about an open surgery, but what about stent placement to open them? Have you seen a surgeon who has dealt with many MALS patients to get their opinion? As far as the sibo, if you go to Dr. Allison Siebecker's web site it is loaded with great information, diets, recipes links, etc. I have learned so much about the sibo from her. I am glad it seems your sibo is under control, but the bloating after eating is a key symptom for me. Many naturopathic drs seem to know more about sibo and treatment. I definitely believe the stomach issues all come from the blood flow. It is a vicious cycle, and I don't know how we get out of it. The malabsorption is also from sibo. It makes it so your body can't absorb the nutrients. I take folic acid, B1, iron, vit d, daily. Are you tired all the time? I have chronic fatigue, but I am wondering how much of my fatigue is also from the sibo, and or MALS. Well thank you for you reply and good luck to you. Keep me posted as to how you are doing.. Oh and as to the drs thinking it is all in our heads, they should take a look at this site, we cant all be crazy!!!!!HaHa

Dear jmmb, I suffer from median arcuate ligament compression with high grade stenosis of the celiac and sma arteries. I found this out after a year of treating my symptoms through a GI doctor. In the course of a year (2016) I had most of the tests everyone else has had, in addition, my GI did a hydrogen breath test for SIBO and one for fructose intolerance. I came back with a very high score for both. I have taken a total of five rounds of Xifaxin, two rounds of Flagyl (metronidazole) and one 14-day course of Diflucan (100 mg) to address the SIBO. My weight had dropped 20 pounds in a four month period with no end in sight so I stayed the course for months taking the antibiotics and anti-fungal. And I did get a bit better. For me, the SIBO treatment seemed to reduce the nausea and stopped the weight loss. I was not able to gain weight, but it helped me to feel a bit better. I have malabsorption issues, which my GI doctor could not figure out. I had a repeat breath test last December (2016) after a full year of treatment and it showed my SIBO numbers for both methane and hydrogen had gone way down. So the GI doctor was able to address the SIBO but I did not feel much better and was not able to absorb food very well. He felt I needed to see a psychologist. I am 60 years old and I know my own body pretty well. I knew this was a physical issue and not a mental one. However, I did go see the psychologist he referred me to and she said during our visit that I needed a second opinion immediately and she got me an appointment to see a GI doctor at the Cleveland Clinic. One month later, the GI doctor at Cleveland looked over all my tests and said, "have and of your doctors ever considered this may be a blood flow issue?" Within a day, I had the Doppler ultrasound and CTA which confirmed 99% stenosis of the celiac artery and over 70% stenosis of the SMA. I was in shock and scared to death. I was referred to a vascular surgeon and a general surgeon at Cleveland who both felt I should not have the surgery (yet) because I do not have the intense pain that goes with MALS. Instead I have a constant, colicky pain, lots of gas, bloating and indigestion, but not the nerve pain most patients report. They said my blood flow seems to be adequate, but not optimal, so that is most likely the cause of the SIBO and malabsorption. I then saw a vascular surgeon back in my city and he felt the same. He said there is enough blood flow to be adequate right now. He said that malabsorption is highly associated with MALS but is not correlated. I share my story in the hopes it may help you. In my situation, it seems to be a condition that I will have to manage daily, and may or may not need to have surgery. I follow a low residue diet and avoid all fruit and many vegetables. I don't like it, but managing the SIBO has enabled me to put back on the 20 pounds I lost. I watch my symptoms very carefully and if I start to drop weight again, I will try a round of the antibiotic and if that does not work, I will know it is time to consider more aggressive treatment. I feel like the other shoe could fall at any time but I try to stay hopeful. Some days it is not possible because I feel so lousy. Other days can be pretty good. I wish you well.

Thank you @kariulrich. . I never was told anything about what you mentioned about the nerve pain or celiac block. I had the angiogram and was told the arteries were good, my pain was not from that so I pursued the sibo. May 2017 I had my ultra sound duplex aorta iliacs bypass grafts. The one where they measure the sound waves. It said : based on systolic velocity this patient high grade stenosis in the celiac and sma arteries, but this is roughly stable compared to prior exam. Now to me that is not reassuring "high grade stenosis" and roughly stable. This is what the Mayo dr. looked at and said its fine then. Now I am curious as to what you are mentioning, maybe there is more to this than I am aware of. Maybe I should get a vascular appt. at Mayo and have their opinion. Maybe there is some nerve pain issues. I know I have a lot of scar tissue as well. This is all so complicated, especially with the sibo....Thank you for your input

Please keep me updated! Yes it is a long road for many, but with that said I know of many success stories that have gone on to live a pain free life! They are out there, you just do jot hear about them on these support groups. Thinking of you and your family!

Have you had a celiac block by chance???

@jmmb so this is where it can get confusing, you can have pain from the celiac artery, however once tha is fixed you can have problems with nerve pain, scar tissue and smaller vessels in the area. There really is no good diagnostic test for causes other than stenosis. A negative ekg is good, but a stress echocardiogram would be better, MRI of the heart... there is also a heart cath angiogram... each test is a bit more invasive so you have to weigh the pros and cons. I understand you felt dismissed with the Mayo doctor, I also have been dismissed by many that did not understand the diagnosis, you are made to think it is all in your head! I was told while lying in the hospital that I should never return to my vascular surgeon, to stay as far away as possible, that I needed to learn the difference between acute pain and chronic pain, it has stuck with me. The doctor that told me this, dismissed a CT scan that showed restenosis of my celiac artery, I suffered for a long time before getting the nerve up to tell my awesome vascular surgeon. I ended up having exploratory surgery which showed restenosis of my celiac graft. I am really sorry to hear this is still happening at Mayo, we need better CME education to all the Mayo staff who potentially could see a MALS patient from the doctors that understand MALS.

Thank you for your thoughtful reply. Yes the first surgeon said he hasn't had favorable outcomes and wasn't confident it would help. We have contacted others who actually specialize in this condition so we are eagerly awaiting those appointments. I agree this is a most difficult condition without a direct treatment. But finding the right team of clinicians that feel confident and imbue that sense of confidence and resilience in my daughter is the key. Because after reading here and on Facebook this is sadly a long road for our beautiful girl. Thank you for your feedback it helps so much .