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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@astaingegerdm

@bfort
I had MALS surgery 1/2015. The ligament was cut as well as many of the nerves in celiac plexus.
6 months later the symptoms returned and I had first stent placed. They said the celiac artery was still very compressed due to the ligament pressure. I was followed annually for a while. The artery with stent was still deformed, but blood flow was good- until recently. Before another procedure a week ago I was more miserable than ever for a few months and lost weight due to not eating much. A new stent was placed. I’m still waiting to hear details next week.
Slowly I’m having less and less symptoms and can eat more now.
The surgeon didn’t guarantee a good outcome- just like they did not do at my first surgery. I never hesitated going ahead- there was minimal quality of life.
An open revascularization is another option mentioned that might be necessary.
I would do that too if this doesn’t work.
These decisions are difficult to make, especially if someone has other serious medical problems.
I’m 78 and I have other health conditions that might worsen and might make me a worse surgical candidate.

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Was your mals surgery open? The ligament needs to be cut all the way back to the spine or it will grow back. I haven’t heard of any successes with stents but that doesn’t mean they don’t work long term. I had a successful mals surgery in Jan. 2020, but am looking at pots and Nutcracker as I have all the pain (except excruciating knife stabbing pain -mals) I had with mals. My epigastric area starts squeezing the minute I move and only gets tighter throughout the day. Vascular compressions are so hard bc it seems they all present differently (somewhat) in different people. I hope you can find answers.

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@lasirvent
I had laparoscopic MALS surgery.
I was aware after the first stent placement that the celiac artery was still deformed from the ligament pressure and that the stent also took on some of that abnormal shape. Blood flow was still good until recently. It lasted 7 years.

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@astaingegerdm

@bfort
I had MALS surgery 1/2015. The ligament was cut as well as many of the nerves in celiac plexus.
6 months later the symptoms returned and I had first stent placed. They said the celiac artery was still very compressed due to the ligament pressure. I was followed annually for a while. The artery with stent was still deformed, but blood flow was good- until recently. Before another procedure a week ago I was more miserable than ever for a few months and lost weight due to not eating much. A new stent was placed. I’m still waiting to hear details next week.
Slowly I’m having less and less symptoms and can eat more now.
The surgeon didn’t guarantee a good outcome- just like they did not do at my first surgery. I never hesitated going ahead- there was minimal quality of life.
An open revascularization is another option mentioned that might be necessary.
I would do that too if this doesn’t work.
These decisions are difficult to make, especially if someone has other serious medical problems.
I’m 78 and I have other health conditions that might worsen and might make me a worse surgical candidate.

Jump to this post

Ingegerd, your posts are so encouraging to me. I found this blog when I was diagnosed in 2018. You have been through a lot and yet your determination is inspiring. I am glad you are still posting. I recovered after robotic lapriscopic surgery and have not been on the blog much. Recently I am having some gastro problems. I am not thinking MALS yet. I’m wonder if you have had the same doctor all this time? If I have to go down that road again, I believe I will need to find a new doctor, and the thought of that os overwhelming.

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@annief
Thank you for your kind words.
I’m very happy that you have recovered from your surgery!
When I first started my journey to find help for my abdominal symptoms I was a mess! Nothing made sense. Doctors locally could not help me so I went to Mayo Clinic. Even there they were confused, but knew something was wrong. Eventually, it turned out that I had two unusual problems. One was MALS and the other was an autoimmune unusual condition. I had the MALS surgery first and later I was treated for the autoimmune condition.
I was fine for some years until a couple of years ago when I thought the autoimmune illness was back. I guess it was a coincidence that MALS symptoms also returned.
I now have an amazing internist- he helps me plan what to do to get better. I tried another GI in a neighboring city, but it didn’t work out- ended up seeing PAs all the time.
My internist then referred me to another GI with excellent credentials- equals long waiting time. It was worth the wait- I just had an endoscopy. A few days before I had a vascular procedure to place another stent in the celiac artery- seems to work well.
My internist also referred me to this vascular surgeon.
As you see, I started over with new specialists.
If you have new GI symptoms try to find an excellent gastroenterologist. Do you have a primary care doctor that can help you search? Your best bet is to go to a university medical center. Many doctors, specialists too, don’t know much about MALS. They have to be able to know what might be new MALS symptoms vs other GI problems. For example, my new GI doctor recognized that many of my symptoms may clear up after the stent was placed. However, one symptom worried him and it did not belong in the MALS related symptoms. The concern was cancer, that’s why the endoscopy. Results good, still waiting for pathology.
I hope I have encouraged you to find new doctors, either by yourself or with a primary care doctor helping you.
Either way I think you should go to a university medical center- your best chance of finding competent specialists.
Let me know what you plan to do!

REPLY
@annief

Ingegerd, your posts are so encouraging to me. I found this blog when I was diagnosed in 2018. You have been through a lot and yet your determination is inspiring. I am glad you are still posting. I recovered after robotic lapriscopic surgery and have not been on the blog much. Recently I am having some gastro problems. I am not thinking MALS yet. I’m wonder if you have had the same doctor all this time? If I have to go down that road again, I believe I will need to find a new doctor, and the thought of that os overwhelming.

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Check out Mals Awareness on Facebook. They’re very helpful

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@astaingegerdm

@bfort
I had MALS surgery 1/2015. The ligament was cut as well as many of the nerves in celiac plexus.
6 months later the symptoms returned and I had first stent placed. They said the celiac artery was still very compressed due to the ligament pressure. I was followed annually for a while. The artery with stent was still deformed, but blood flow was good- until recently. Before another procedure a week ago I was more miserable than ever for a few months and lost weight due to not eating much. A new stent was placed. I’m still waiting to hear details next week.
Slowly I’m having less and less symptoms and can eat more now.
The surgeon didn’t guarantee a good outcome- just like they did not do at my first surgery. I never hesitated going ahead- there was minimal quality of life.
An open revascularization is another option mentioned that might be necessary.
I would do that too if this doesn’t work.
These decisions are difficult to make, especially if someone has other serious medical problems.
I’m 78 and I have other health conditions that might worsen and might make me a worse surgical candidate.

Jump to this post

Thanks for responding. I love your positive attitude.
I'll keep you in my prayers for continued success and feeling be better each day.
I'm submitting all my tests to Dr Hsu for further evaluation.
Then I'll decide about the stent surgery. 🙏🙏

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@astaingegerdm

@annief
Thank you for your kind words.
I’m very happy that you have recovered from your surgery!
When I first started my journey to find help for my abdominal symptoms I was a mess! Nothing made sense. Doctors locally could not help me so I went to Mayo Clinic. Even there they were confused, but knew something was wrong. Eventually, it turned out that I had two unusual problems. One was MALS and the other was an autoimmune unusual condition. I had the MALS surgery first and later I was treated for the autoimmune condition.
I was fine for some years until a couple of years ago when I thought the autoimmune illness was back. I guess it was a coincidence that MALS symptoms also returned.
I now have an amazing internist- he helps me plan what to do to get better. I tried another GI in a neighboring city, but it didn’t work out- ended up seeing PAs all the time.
My internist then referred me to another GI with excellent credentials- equals long waiting time. It was worth the wait- I just had an endoscopy. A few days before I had a vascular procedure to place another stent in the celiac artery- seems to work well.
My internist also referred me to this vascular surgeon.
As you see, I started over with new specialists.
If you have new GI symptoms try to find an excellent gastroenterologist. Do you have a primary care doctor that can help you search? Your best bet is to go to a university medical center. Many doctors, specialists too, don’t know much about MALS. They have to be able to know what might be new MALS symptoms vs other GI problems. For example, my new GI doctor recognized that many of my symptoms may clear up after the stent was placed. However, one symptom worried him and it did not belong in the MALS related symptoms. The concern was cancer, that’s why the endoscopy. Results good, still waiting for pathology.
I hope I have encouraged you to find new doctors, either by yourself or with a primary care doctor helping you.
Either way I think you should go to a university medical center- your best chance of finding competent specialists.
Let me know what you plan to do!

Jump to this post

Thanks for the encouragement. Thankfully my GP was determined the first time around. I will still need her but I would like to get with an experienced team if I have to go down that road. Going out of state does not seem feasible for me financially. I’ll keep you posted.

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@astaingegerdm

@annief
Thank you for your kind words.
I’m very happy that you have recovered from your surgery!
When I first started my journey to find help for my abdominal symptoms I was a mess! Nothing made sense. Doctors locally could not help me so I went to Mayo Clinic. Even there they were confused, but knew something was wrong. Eventually, it turned out that I had two unusual problems. One was MALS and the other was an autoimmune unusual condition. I had the MALS surgery first and later I was treated for the autoimmune condition.
I was fine for some years until a couple of years ago when I thought the autoimmune illness was back. I guess it was a coincidence that MALS symptoms also returned.
I now have an amazing internist- he helps me plan what to do to get better. I tried another GI in a neighboring city, but it didn’t work out- ended up seeing PAs all the time.
My internist then referred me to another GI with excellent credentials- equals long waiting time. It was worth the wait- I just had an endoscopy. A few days before I had a vascular procedure to place another stent in the celiac artery- seems to work well.
My internist also referred me to this vascular surgeon.
As you see, I started over with new specialists.
If you have new GI symptoms try to find an excellent gastroenterologist. Do you have a primary care doctor that can help you search? Your best bet is to go to a university medical center. Many doctors, specialists too, don’t know much about MALS. They have to be able to know what might be new MALS symptoms vs other GI problems. For example, my new GI doctor recognized that many of my symptoms may clear up after the stent was placed. However, one symptom worried him and it did not belong in the MALS related symptoms. The concern was cancer, that’s why the endoscopy. Results good, still waiting for pathology.
I hope I have encouraged you to find new doctors, either by yourself or with a primary care doctor helping you.
Either way I think you should go to a university medical center- your best chance of finding competent specialists.
Let me know what you plan to do!

Jump to this post

The stent option sounds so encouraging. Just read on one of the FB groups of someone who is remarkably better after a stent. Is your still working? That sounds like such an easy solution compared to the surgeries. Did they go through your groin to do the stent? Had a colonoscopy yesterday and things could not look better. Cleared for another 10 years which is great news. But my symptoms are blamed on IBS. I have had IBS flares but not like this. So I will follow the doctors orders and see him in a month.

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@annief -
Congratulations on your colonoscopy! I had my latest- and last one I hope, 2021.
It’s a very good order you got to follow up with your doctor in a month- especially since your IBS symptoms seems excessive.
I’m now 2 weeks out from my stent procedure and I am so pleased that all my debilitating symptoms are gone! I’m still fatigued, but not as bad as before. The entry was in the groin.
I would definitely do this again if I had to!

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@astaingegerdm

@annief -
Congratulations on your colonoscopy! I had my latest- and last one I hope, 2021.
It’s a very good order you got to follow up with your doctor in a month- especially since your IBS symptoms seems excessive.
I’m now 2 weeks out from my stent procedure and I am so pleased that all my debilitating symptoms are gone! I’m still fatigued, but not as bad as before. The entry was in the groin.
I would definitely do this again if I had to!

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So happy your stent has helped. The fatigue and random pain I have and the fact that I don’t have an appetite and can’t eat big meals has me thinking not IBS. I know my nerves are gone from the surgery so I assume that’s why I do not have the pain in the same area I did before. But, I am going to focus on de-stressing since my doc thinks that’s what’s causing my symptoms and see him in a month. Who knows, I have been under a lot of stress so I hope he is right. 🙂

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