Median Arcuate Ligament Syndrome (MALS)

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?

@chicken

I have severe aretery compression, but the surgeon said that he will cut not only the ligament away but also seperate all the nerves…. Is that the ganglion nerves? I have been followed by cincinnati childrens, so I'm getting the surgery done by someone there… According to him, he's done a bunch of these such cases with an 80% sucess rate, and has never need to resort to open during the surgery… The 20% he says had a different diagnosis which was causing their symptoms so the surgery didnt help..

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You really need to get a second opinion because it isn’t just about Separating the nerves. Dr. Hsu just something very specific that I’ve heard of no other doctor doing that make sure that nerve pain does not come back because nerves can grow back and if it’s not done properly you will end up back in the same boat. This is a major surgery and I would not have anyone cut on me until I had had more than one opinion

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@chicken

Does anyone have any info on the laproscopic robotic surgery? recovery time, and sucess?

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I would ask your surgeon how many they have done via robotics and their success rate. I wish I was more familiar with that procedure in MALS.

Liked by techchick1025

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@kariulrich

Depending on the suspected cause, for MALS it is a diagnosis of last resort, so a comprehensive GI work up is needed. There are other diagnosis that can cause symptoms. I think this is a great resource:https://rarediseases.org/rare-diseases/median-arcuate-ligament-syndrome/

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Exactly. I have been diagnosed with gastroparesis, had to have my gallbladder removed, and I also had sphincter of Odii surgery. I also ended up with small bowel AVMs that had to be cauterized that was causing my anemia and now they’re checking for celiac disease as well in addition I also have reactive chemical gastrophy and severe chronic gastritis.

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@techchick1025

You really need to get a second opinion because it isn’t just about Separating the nerves. Dr. Hsu just something very specific that I’ve heard of no other doctor doing that make sure that nerve pain does not come back because nerves can grow back and if it’s not done properly you will end up back in the same boat. This is a major surgery and I would not have anyone cut on me until I had had more than one opinion

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The problem is that there really isn't a lot of surgeons who do this so it's hard to get a second opinion….;) But my Gi recomended this doc, and he is the only one in Cincinnati Childrens who performs this surgery.. According to him, he performs this surgery about once every 3-4 months, and 80% of patients are totally "cured". He said that he used to just do laproscopic but started robotic a few years ago and hasn't gone back since its easier and safer to do because he can get into tighter spaces…

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What i really want to know is, will I actually be totally better after the surgery, or will symptoms return after a few months?

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@chicken

I have severe aretery compression, but the surgeon said that he will cut not only the ligament away but also seperate all the nerves…. Is that the ganglion nerves? I have been followed by cincinnati childrens, so I'm getting the surgery done by someone there… According to him, he's done a bunch of these such cases with an 80% sucess rate, and has never need to resort to open during the surgery… The 20% he says had a different diagnosis which was causing their symptoms so the surgery didnt help..

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@chicken, unfortunately there are different theories on the cause of symptoms and more research needs to be done. You are correct it is the ganglion nerves. If your surgeon is familiar with this technique and has a good success rate that is first hurdle. There are many sucess stories that we in MALS Pals and here never hear about, so keep that in mind when you are reading through patient experiences.

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Thank you!! I don't really think there is a reason not to do the surgery, because there really isnt anything else to do and I don't want to live like this forever… No one here has gotten the laproscopic robotic surgery?

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@chicken

What i really want to know is, will I actually be totally better after the surgery, or will symptoms return after a few months?

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Each person is different, there have been many success stories. I believe starting with a less invasive approach is always good if your surgeon is familiar with MALS. The recovery can be long and very gradual no matter what approach is taken. Also of you have any other diagnosis, how long you have had the stenosis, the degree of stenosis… there are many factors that contribute to the success rate. I have never regretted my surgeries, each improved my quality of life. I hope this helps some.

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@chicken

Thank you!! I don't really think there is a reason not to do the surgery, because there really isnt anything else to do and I don't want to live like this forever… No one here has gotten the laproscopic robotic surgery?

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I know there is others who have had lap robotic surgery and it was successful :). I am just not familiar with it personally.

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@chicken

I have severe aretery compression, but the surgeon said that he will cut not only the ligament away but also seperate all the nerves…. Is that the ganglion nerves? I have been followed by cincinnati childrens, so I'm getting the surgery done by someone there… According to him, he's done a bunch of these such cases with an 80% sucess rate, and has never need to resort to open during the surgery… The 20% he says had a different diagnosis which was causing their symptoms so the surgery didnt help..

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I had robotic laparoscopic surgery on October 3, 2018. I am almost 60 in good health and no other diagnosis. So far so good. Don’t let laparoscopic fool you. I traded one long incision for 6 small ones. It is a major surgery. I would plan on a 5 to 6 week recovery. Could be shorter or longer.

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@chicken

The problem is that there really isn't a lot of surgeons who do this so it's hard to get a second opinion….;) But my Gi recomended this doc, and he is the only one in Cincinnati Childrens who performs this surgery.. According to him, he performs this surgery about once every 3-4 months, and 80% of patients are totally "cured". He said that he used to just do laproscopic but started robotic a few years ago and hasn't gone back since its easier and safer to do because he can get into tighter spaces…

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wow 80 percent that is good my vascular doctor gave a 50 percent my doctor also stressed it would cost 100,000 just for th3 surgery and tha5 was 10 years ago. I often wonder if they don’t want to surgery because of the cost and they might not get the money they want.

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So many different conditions that come along with this overwhelming

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@helenannmarie55

So many different conditions that come along with this overwhelming

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Yes, its a little crazy!!!! My doctor said that many times people have MALS without symptoms so the pain that they are experiencing is from something else entirely. That's why they like to do the whole full GI workup to rule everything else out… Which makes me nervous that my current pain is not from MALS but from something else, so the surgery might be totally pointless…

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I was wondering if anyone who has had the MALS surgery done laparoscopic could give me some information on how their recovery went, how long their hospital stay was, etc? Thank you!

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@chicken

I was wondering if anyone who has had the MALS surgery done laparoscopic could give me some information on how their recovery went, how long their hospital stay was, etc? Thank you!

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@chicken although I did not have laparoscopic the patients I have spoken with have had an overall faster recovery period in regards to incisional pain and hospital recovery; however, the long term recovery was very similar to open in that is was at least 6 months before the whole digestive system and eating returned to normal. Recovery is a very slow process with MALS and when you think about how long you live with the symptoms it is no surprise it would take a considerable amount of time to get functionality back. The biggest challenge after surgery is eating, because you don’t feel pain after eating you tend to overeat (or eat a normal meal) and your body is not use it. The best advice I can give you is to eat small frequent meals for awhile. I hope this helps! Keep asking questions!

Liked by chicken

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