Median Arcuate Ligament Syndrome (MALS)

@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.

@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.

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.

@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.

@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!

@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!

@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!