Median Arcuate Ligament Syndrome (MALS)

Posted by Kari Ulrich, Alumna Mentor @kariulrich, Dec 26, 2016

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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@lasirvent

That’s funny! I used to eat licorice all the time! I’m going to give that a try. What brand do you use?

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I used to eat a lot of Pontefract cakes or Barratt Hard Liquorice sticks (not sure of the US equivalent.) Sadly, my sweet eating days are over as pretty much all sweets contain Palm oil or High fructose corn syrup, two ingredients I generally avoid. There is an alternative, using natural liquorice root sticks and making into a tea (do a search,) it is a staple in Chinese herbal medicine.

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In reply to @destinysmom "Look at this site!" + (show)
@destinysmom

Look at this site!

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If you’re on Facebook take a look at Mals Awareness-they have a list of surgeons who have done mals surgery and people that you can ask questions.

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@jayson - I realize that I must have been very lucky with surgeons. At my first visit I decided to go ahead. I had educated myself first of the condition and who the surgeon was. He was head of GI surgery at a major university hospital. He had not performed many MALS surgeries during his long career, but was able to give me the odds of success. I did trust him and I knew I didn’t want to continue with the pain. The surgery was a success. However after 6 months the artery had crumpled up some and the top vascular surgeon placed a stent. So far so good.
In other words- my initial surgeon was not a vascular surgeon.

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@jhmontrose

Jayson, I can relate. When I had my initial diagnosis in 2015 I saw so many GI docs and most of them were so incredibly dismissive. My first one seemed to have only one answer: take more prilosec, take protonix, double up on protonix. So I finally said to him "is that your only answer, take more acid suppressants?" and he got visibly angry at me and said "do you want to get well?" So condescending. Then I had an ER doc accuse me of just being a drug seeker and sending me home after zero tests. After doing every GI test imaginable I finally saw an RN at an urgent care office who looked at my history and offered to make some calls for me on her lunch break. She set me up with a young GI specialist who ordered a HIDA scan (all clear) and the mesenteric artery ultrasound that finally diagnosed me. If it wasn't for those two, I have no idea how much longer it would have gone on.

Unfortunately, like you, I am having a recurrence of symptoms after 5 years. Last night was the worst night I've had since 2015, sharp pain building up, had to take an oxycodone and sleep propped up, then I still woke up nauseous. That has been my worst symptom and thankfully this time around, I am not having too much trouble eating. Once I get up and move around the nausea fades but pain persists. I'm getting a nerve block done next week and hoping the pain care center will also offer me some help over the next few weeks while I wait for what I expect to be a second surgery.

As far as seeing a new surgeon, I would at least google search and see what other patients have reported. The one I've been consulting is very young but has a special interest in MALS. Another surgery is scary to think about but so is living with constant bouts of pain/nausea.

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Look at this site!

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@jhmontrose

Jayson, I can relate. When I had my initial diagnosis in 2015 I saw so many GI docs and most of them were so incredibly dismissive. My first one seemed to have only one answer: take more prilosec, take protonix, double up on protonix. So I finally said to him "is that your only answer, take more acid suppressants?" and he got visibly angry at me and said "do you want to get well?" So condescending. Then I had an ER doc accuse me of just being a drug seeker and sending me home after zero tests. After doing every GI test imaginable I finally saw an RN at an urgent care office who looked at my history and offered to make some calls for me on her lunch break. She set me up with a young GI specialist who ordered a HIDA scan (all clear) and the mesenteric artery ultrasound that finally diagnosed me. If it wasn't for those two, I have no idea how much longer it would have gone on.

Unfortunately, like you, I am having a recurrence of symptoms after 5 years. Last night was the worst night I've had since 2015, sharp pain building up, had to take an oxycodone and sleep propped up, then I still woke up nauseous. That has been my worst symptom and thankfully this time around, I am not having too much trouble eating. Once I get up and move around the nausea fades but pain persists. I'm getting a nerve block done next week and hoping the pain care center will also offer me some help over the next few weeks while I wait for what I expect to be a second surgery.

As far as seeing a new surgeon, I would at least google search and see what other patients have reported. The one I've been consulting is very young but has a special interest in MALS. Another surgery is scary to think about but so is living with constant bouts of pain/nausea.

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My surgeon, Dr. Hsu in Stamford, Ct was amazing. He has a 92% success rate with MALS and is a Nuevo-Vascular surgeon. He has done almost 400 MALS open surgeries. I chose to fly from Phoenix to Ct. bc I didn’t want to do this again. It’s worth the extra effort. Hope you find someone.

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@ukmalsman

Hi @chicken

Again, I have to agree with @lasirvent, Lactulose is a great way to increase intestinal motility. I was given it many years ago after a laparotomy which basically caused my intestines to shut down completely. It took a while to get going again but the Lactulose worked.

I stopped using Lactulose in favour of a more natural remedy, so I started eating liquorice daily. I didn't eat too much and it is important to let you know that eating a lot of liquorice daily can reduce your potassium levels which in turn can cause high blood pressure. It is always best to discuss with your primary practitioner as a lot of liquorice can interact with certain meds like warfarin.

However, the benefits of eating liquorice for digestive problems and other conditions can be great, it is thought to have antimicrobial, anti-inflammatory and antiviral properties too. Just make sure that if you buy liquorice sweets, they actually contain liquorice plant extract, as many sweet sold as liquorice don't have any liquorice in them at all. You can get deglycyrrhizinated liquorice as over the counter supplements, this stops the possibility of those side effects as the cause, (glycyrrhizic acid) is extracted. But I'm a liquorice sweet fan and enjoy the yummy taste of the sweets! Look up the benefits of deglycyrrhizinated liquorice if you are wanting an over the counter remedy.

Mark

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That’s funny! I used to eat licorice all the time! I’m going to give that a try. What brand do you use?

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@jhmontrose

Jayson, I can relate. When I had my initial diagnosis in 2015 I saw so many GI docs and most of them were so incredibly dismissive. My first one seemed to have only one answer: take more prilosec, take protonix, double up on protonix. So I finally said to him "is that your only answer, take more acid suppressants?" and he got visibly angry at me and said "do you want to get well?" So condescending. Then I had an ER doc accuse me of just being a drug seeker and sending me home after zero tests. After doing every GI test imaginable I finally saw an RN at an urgent care office who looked at my history and offered to make some calls for me on her lunch break. She set me up with a young GI specialist who ordered a HIDA scan (all clear) and the mesenteric artery ultrasound that finally diagnosed me. If it wasn't for those two, I have no idea how much longer it would have gone on.

Unfortunately, like you, I am having a recurrence of symptoms after 5 years. Last night was the worst night I've had since 2015, sharp pain building up, had to take an oxycodone and sleep propped up, then I still woke up nauseous. That has been my worst symptom and thankfully this time around, I am not having too much trouble eating. Once I get up and move around the nausea fades but pain persists. I'm getting a nerve block done next week and hoping the pain care center will also offer me some help over the next few weeks while I wait for what I expect to be a second surgery.

As far as seeing a new surgeon, I would at least google search and see what other patients have reported. The one I've been consulting is very young but has a special interest in MALS. Another surgery is scary to think about but so is living with constant bouts of pain/nausea.

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I can only imagine how your feeling and going through. My symptoms started back up with the pain and discomfort that came from eating. The pain starts below my sternum and rib area. I get a burning and knocking the air feeling. Nausea and having very low energy due to my pain. Again I'm hopeful that my new vascular surgeon helps in this journey to getting well. However, if she doesn't then my general surgeon said the next option would be to have another open surgery to remove the scar tissue. He stated that he has never done two open surgery before and it's very risky to do. My first surgery was a 4-hour ordeal. The ligament that he had to cut was extremely difficult to remove. He said the risky part was the surgery would more than likely be double the time because of the scar tissue that is built up. Well, I pray that your pain and discomfort go away when you get the nerve block.

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@jayson

The original surgeon I feel was very good. He took the time to listen to me and was very understanding. He was the only one who believed me unlike others I dealt with. My first vascular surgeon laughed at me and said that your celiac artery wasn't the problem. That it was all just in my head. It wasn't until Dr. Lowery sent me out for another Doppler US. My velocities were from 580 to 620. After that, the original vascular surgeon sent a certified letter stating my health was in danger and I needed to see him ASAP. LOL! So I'm very reluctant to see this new vascular surgeon her name is Jenny Cho. She's out of KU MED CENTER IN KS. So I have an appointment on April 8th and we will see what she wants to do. I feel she will just blow me off as the other did. It sad people go to their doctors and they just look at you as nothing is wrong. It's their arrogance that comes through when they don't know about MALS. However, I believe I found a good general surgeon who listens and is willing to do what is right for me.

Jump to this post

Jayson, I can relate. When I had my initial diagnosis in 2015 I saw so many GI docs and most of them were so incredibly dismissive. My first one seemed to have only one answer: take more prilosec, take protonix, double up on protonix. So I finally said to him "is that your only answer, take more acid suppressants?" and he got visibly angry at me and said "do you want to get well?" So condescending. Then I had an ER doc accuse me of just being a drug seeker and sending me home after zero tests. After doing every GI test imaginable I finally saw an RN at an urgent care office who looked at my history and offered to make some calls for me on her lunch break. She set me up with a young GI specialist who ordered a HIDA scan (all clear) and the mesenteric artery ultrasound that finally diagnosed me. If it wasn't for those two, I have no idea how much longer it would have gone on.

Unfortunately, like you, I am having a recurrence of symptoms after 5 years. Last night was the worst night I've had since 2015, sharp pain building up, had to take an oxycodone and sleep propped up, then I still woke up nauseous. That has been my worst symptom and thankfully this time around, I am not having too much trouble eating. Once I get up and move around the nausea fades but pain persists. I'm getting a nerve block done next week and hoping the pain care center will also offer me some help over the next few weeks while I wait for what I expect to be a second surgery.

As far as seeing a new surgeon, I would at least google search and see what other patients have reported. The one I've been consulting is very young but has a special interest in MALS. Another surgery is scary to think about but so is living with constant bouts of pain/nausea.

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@astaingegerdm

@jayson - It is very upsetting to get the symptoms back. I did after 6 months. They did another angio CT and saw that the artery had not opened up after the pressure from the ligament was removed.
The plan was to try placing a stent- I was warned that if that failed they would have to open up and repair artery.
Do you have confidence in your surgeon?

Jump to this post

The original surgeon I feel was very good. He took the time to listen to me and was very understanding. He was the only one who believed me unlike others I dealt with. My first vascular surgeon laughed at me and said that your celiac artery wasn't the problem. That it was all just in my head. It wasn't until Dr. Lowery sent me out for another Doppler US. My velocities were from 580 to 620. After that, the original vascular surgeon sent a certified letter stating my health was in danger and I needed to see him ASAP. LOL! So I'm very reluctant to see this new vascular surgeon her name is Jenny Cho. She's out of KU MED CENTER IN KS. So I have an appointment on April 8th and we will see what she wants to do. I feel she will just blow me off as the other did. It sad people go to their doctors and they just look at you as nothing is wrong. It's their arrogance that comes through when they don't know about MALS. However, I believe I found a good general surgeon who listens and is willing to do what is right for me.

REPLY

@jayson - It is very upsetting to get the symptoms back. I did after 6 months. They did another angio CT and saw that the artery had not opened up after the pressure from the ligament was removed.
The plan was to try placing a stent- I was warned that if that failed they would have to open up and repair artery.
Do you have confidence in your surgeon?

REPLY
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