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?

Interested in more discussions like this? Go to the Digestive Health Support Group.

@lisa01

Are you aware of a FB support group called MALS PALS. It is a support group for people suffering with MALS and their loved ones. It gives a tremendous amount of informstion of individual struggles, and various treatments and specialists that treat MALS. Highly recommended!!

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I’m Ralph help me lm having connecting with the FB support group. Want to join, Thank yuu Ralph

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@kariulrich

For me I was diagnosed as an adult, although I had always had stomach issues at a young age. I do not know one specific event, at least one that I can recall. My weight loss and postpandrial pain was never understood until I had my first cath angiogram at Mayo for an underlying vascular disease. That is when the severity of the stenosis was noted, and at the time I was drinking ensure to keep my energy level up. I spent many days in bed, because of lack of energy, deconditioning and malnutrition. Since my surgery I have been able to eat without pain, and my energy has improved some.

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Dear Kari: lm Ralph, you have really helped me by your group questions. I was diagnosed with mals, in bed for 22 years and this is the cause. I’m also on TPN daily this may help you regain nutrients, and the process is not painfull so don’t worry. At least l know what’s coming up for me. I pray your journey is rewarding. Mayo would not make a appointment for me. I do not know where to turn or do, so any one out there that can help me l would appreciate it. Good luck Kari.

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I just had surgery on November 19. As of now the nausea and throwing up have got better. But I’m still experiencing a lot of pain after I eat. Has an one else had surgery? Where do I go from here?

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@astaingegerdm

@jhmontrose - I’m so sorry to hear this!
Do you have symptoms?
If not, having vascular surgery because of the numbers may be too risky.

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I’m Ralph, l am a new member, l have mals described in a written CT scan during a life emergency surgery where the UCI surgeon removed a part of necrotic intestine. Also in another CT scan evidenced the same condition. I have had many tests done, but would like to be admitted to Mayo Clinic Arizona and let them take over, since ucla and UCI of Calif. really have not the Vascular surgeons to do this ligament decompression. I’m telling my story for any one and you for help. I have been bedridden with this disease undignoised for 22 years, on TPN, with severe chronic pain. When l called Mayo they gave me an lD patient number, but unable to give me an appointment. How can l find a way into Mayo and be medically evaluated and if need be have surgery. This brings me to the ? can you explain not having vascular surgery because the numbers are too risky ? If you or anyone else has had this median arcuate ligament release surgery, l would like to know what is involved start to recovery. Thank you for listening to me, and l wish you the best during your journey back to health.

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@kariulrich

When one starts to loose weight it happens rapidly, at least it did for me. I was an adult size 12 normally went down to a size 2 shorts falling off my hips. She sound like she is a survivor!!! I am impressed so happy she is going to prom! (Hope we get to see some pictures 🙂 !!! We are hear cheering for you! You all got this! Hang in there, NJ Tube and all! Hugs, Kari

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Hi lm Ralph, in my 1st 2 years of weight drop from about 200lbs to 119 lbs, l changed gastro. Doctors, and he put me on TPN, l receive all my nutrition from it. The line is inserted in the fore arm, virtually painless, a nurse comes to my home and services the TPN. It is not uncomfortable at all for me. Look in to it. Having an NG would be horrifying for me. You may want to have a second opinion this just doesn’t seem right to me, lm not a doctor. TPN/ Temporary Peritoneal Nutrition . Good luck and my thoughts are with you,

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@rbertolino85 - Hi Ralph!
I had the MALS surgery 7 years ago and shortly after a stent was placed in the celiac artery- no symptoms since. A general GI surgeon removed the ligament and a vascular surgeon placed the stent.
You mentioned that you had surgery to remove necrotic bowel- what was the cause? Is this the reason why you receive TPN?
You also mentioned that your numbers are too risky? Can you elaborate more?
What diagnosis has your current GI given you?

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@lasirvent

I.-I’m so glad to hear that you had surgery for mals. It’s the right step forward and good to have another surgeon that does surgery the same method as Dr. Hsu. Take it easy and be patient-it takes a while for those nerves to realize they’re not being agitated and your brain too.

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Hi: lam Ralph a new member, l hope you are doing well. I have been looking beyond The Mayo Clinic in Arizona, a hospital who speciality is surgery of the median arcuate ligament release. I would be grateful if you or any one else knows. Thank you,

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@rbertolino85

I’m Ralph, l am a new member, l have mals described in a written CT scan during a life emergency surgery where the UCI surgeon removed a part of necrotic intestine. Also in another CT scan evidenced the same condition. I have had many tests done, but would like to be admitted to Mayo Clinic Arizona and let them take over, since ucla and UCI of Calif. really have not the Vascular surgeons to do this ligament decompression. I’m telling my story for any one and you for help. I have been bedridden with this disease undignoised for 22 years, on TPN, with severe chronic pain. When l called Mayo they gave me an lD patient number, but unable to give me an appointment. How can l find a way into Mayo and be medically evaluated and if need be have surgery. This brings me to the ? can you explain not having vascular surgery because the numbers are too risky ? If you or anyone else has had this median arcuate ligament release surgery, l would like to know what is involved start to recovery. Thank you for listening to me, and l wish you the best during your journey back to health.

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Hi Ralph, I add my welcome. It sounds like you've been looking for resolution to your digestive issues for quite some time. With respect to getting an appointment at Mayo Clinic, unfortunately Mayo Clinic has more requests for appointments than available openings. You may wish to read the tips that others offer in this discussion:
- Can't get an appointment: Any tips on what to do? https://connect.mayoclinic.org/discussion/cant-get-an-appointment/

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@astaingegerdm

@rbertolino85 - Hi Ralph!
I had the MALS surgery 7 years ago and shortly after a stent was placed in the celiac artery- no symptoms since. A general GI surgeon removed the ligament and a vascular surgeon placed the stent.
You mentioned that you had surgery to remove necrotic bowel- what was the cause? Is this the reason why you receive TPN?
You also mentioned that your numbers are too risky? Can you elaborate more?
What diagnosis has your current GI given you?

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Hi: They didn’t know. How could they not know, mals causes lack of blood flow to the intestines. They had an unconcerned attitude. This is why l feel need help soon. I have suffered too long and then die because of lack of proficient medical care. I’m very upset and need to get medical help now. Does anyone know where l can get the care l need without waiting another 6 months or longer to be treated ? The chronic pain now has been intolerable, l live at home in a room isolated, with no help from others, l feel lm dying on the vine and my doctors are not alarmed to the extent of my medical conditions. For your answer lngegerd, l have had 1 gastric by pass, the necrotic intestine removal (recissions), and another recission. I have been on TPN off and primarily on TPN for 22 years. Another GI doctor said in his written report, that the gastric by pass doctor botched my surgery. He clearly said in his findings report l have , this doctor mutilated my intestines.
I do not know about ‘’my numbers’’ you mentioned. UCI always tell me they are uncertain, l need to get away from UCI, asap. Again, does anyone know where l can be diagnosed ? And sooner than latter? My condition worsens weekly, lm doing my Will this week, l Truely need help. Hope all is well with
all of my brothers and sisters suffering. Ralph@gmail.com

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Ralph, I understand now what a terrible situation you are in! 22 years!
I asked my director, Colleen Young, to give you more information on how to get into Mayo. Arizona appears to be harder to get into. Please consider Mayo in Rochester, MN and in Jacksonville, FL. I have been to both. Superb.

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