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Median Arcuate Ligament Syndrome (MALS)

Posted by @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?

REPLY

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!!

@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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Thank you, Yes @lisa01 I am part of MALS PALS, but I do like the security of being here on Mayo connect vs Facebook when it comes to health information security. I was hoping that a group would start here for MALS. If we had enough patients here on Mayo Connect maybe they would consider doing a webinar in the future. I really like the format of this site. I have had Open Mals surgery twice, once for a bypass and then a revision several years later. If there is anyone interested in joining me here let me know.

Hi @kariulrich,

We have a fairly recent discussion on Celiac Artery Aneurysm; is there any connection between MALS and celiac artery aneurysms?
You can find the discussion here:
https://connect.mayoclinic.org/discussion/celiac-artery-aneurysm/

Hello, my 16 yr old Daughter has been diagnosed with MALS. We are coming to Mayo, MN, in February for an open surgery with a Vascular Surgeon. I, too, am interested in connecting with others to best understand this condition, follow up care and research resources. I would be interested in the webinar. Thank you Colleen!

Hello @lmtuska,

I’m sorry to hear about your daughter’s diagnosis, but so glad that you’ve come to the Connect Community.
MALS is such a rare disease, and because of the variety of symptoms, it can often be misdiagnosed. I’m confident that @kariulrich will join in with some answers and insight about her experience with MALS. I would like to tag @afternoonnapper1 too, who had discussed blockage of the celiac arteries, in the past.

In the meantime, I would also encourage you to read this article about research done at Mayo Clinic which discusses the effectiveness of endovascular repair involving branches of the celiac and superior mesenteric arteries: http://mayocl.in/1OS5tAf

@lmtuska, if you have any questions about coming to Mayo Clinic, please feel free to ask; we are here to help you. How has your daughter been coping with this condition, especially with regard to eating?

@lmtuska

Hello, my 16 yr old Daughter has been diagnosed with MALS. We are coming to Mayo, MN, in February for an open surgery with a Vascular Surgeon. I, too, am interested in connecting with others to best understand this condition, follow up care and research resources. I would be interested in the webinar. Thank you Colleen!

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@lmtuska, Nice to meet you! I have had 2 MALS surgeries done at Mayo, and would be happy to share any information that would be helpful. Mals in the pediatric population may be a bit different than the adult population. My experience is a bit different as I have an underlying vascular disease. There are two approaches to MALS surgery, laparoscopic and open. I would recommend asking about the pros and cons of both. It sounds like you have opted for the open approach. The open surgery is a long recovery time, for me it was at least a year. This is a small list of things that helped me:

Open MALS Helpful Hints

• No perfume, lotion, hairspray, fabric softener (Smells really bothered me after surgery)

• Needs: 1 size larger underwear and socks, slip on shoes
Loose fitting comfy yoga pants
Undershirt soft to protect clothes from rubbing against the incision

• Several travel size pillows

• Wash everything in dreft before using (My skin was sensitive)

• Unscented lotion for back rubs

• Ice pack help for back pain

• Electronic chair (If you can afford purchasing one, I highly recommend it) Great for sleeping in the first few months or more.

• Foods malt o meal good, pudding, white toast, popsicle, anything easy to digest

• Mask and headphones or ear plugs

• Something from home, small, a stuffed animal anything to keep with you

• Eat slow, very slow If you think you are eating slow eat even slower. Advance diet slowly, VERY SMALL PORTIONS. Use your iPhone during dinner to keep you entertained, yes you should be eating that slow. Eat 1/2 of what you think you can eat. After surgery, there is no longer post prandial pain and your body is malnourished so it is easy to over eat and the fact you want to eat is an amazing feeling in itself. 

@lmtuska

Hello, my 16 yr old Daughter has been diagnosed with MALS. We are coming to Mayo, MN, in February for an open surgery with a Vascular Surgeon. I, too, am interested in connecting with others to best understand this condition, follow up care and research resources. I would be interested in the webinar. Thank you Colleen!

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Hello @kariulrich,
Thank you so much for all of the information. We are so new to all of this. The biggest identifying piece to our puzzle was the doppler ultrasound at 414+ velocity and then the CT-A Scan. We look forward to meeting with Mayo, discussing our options and learning the pros & cons for open vs. lap surgery. The difficult part is she is living on an NJ Tube, due to the pain and nausea when eating. We are finding hope each day hearing others’ stories. Were you able to eat again after the surgeries?

@kanaazpereira

Hello @lmtuska,

I’m sorry to hear about your daughter’s diagnosis, but so glad that you’ve come to the Connect Community.
MALS is such a rare disease, and because of the variety of symptoms, it can often be misdiagnosed. I’m confident that @kariulrich will join in with some answers and insight about her experience with MALS. I would like to tag @afternoonnapper1 too, who had discussed blockage of the celiac arteries, in the past.

In the meantime, I would also encourage you to read this article about research done at Mayo Clinic which discusses the effectiveness of endovascular repair involving branches of the celiac and superior mesenteric arteries: http://mayocl.in/1OS5tAf

@lmtuska, if you have any questions about coming to Mayo Clinic, please feel free to ask; we are here to help you. How has your daughter been coping with this condition, especially with regard to eating?

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Hello @kanaazpereira,

Great Info. She eats through an NJ Tube 90% of the time now. She just wants to be able to finish High School with normal hopes — eating again and a date to the prom. She went from a size 10 to 0, losing 30 pounds in 9 months. She has been told she has SMA, and a possible clot in her SMV. As parents, we just want her safe. Her first diagnosis was Gastroparesis, and when the medicines did not help, she researched and requested the Doppler Ultrasound. That was the moment her doctor called us and told us she had MALS. She was normal and healthy prior to July 2015. Thank you again!

@kanaazpereira

Hi @kariulrich,

We have a fairly recent discussion on Celiac Artery Aneurysm; is there any connection between MALS and celiac artery aneurysms?
You can find the discussion here:
https://connect.mayoclinic.org/discussion/celiac-artery-aneurysm/

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No there should not be a connection between the two.

@lmtuska

Hello, my 16 yr old Daughter has been diagnosed with MALS. We are coming to Mayo, MN, in February for an open surgery with a Vascular Surgeon. I, too, am interested in connecting with others to best understand this condition, follow up care and research resources. I would be interested in the webinar. Thank you Colleen!

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I am glad you will be going to Mayo, and yes I was able to eat again after the surgery. It was a big adjustment, because I had not post prandial pain and I would over do it. When you over eat too fast it gives you bowel issues (diarrhea), so be prepared to have her take things slow. Have been pain free for over a year, and I have gained back all the weight I had lost. I was fortunate not to have a NG tube, but my diet before the surgery left me malnourished. I could not tolerate food, but would drink sips of ensure or bites of a cookie through out the day. I called it the cookie diet because I could only tolerate carbs. Please tell your daughter I am thinking of her and we are here for both of you! @lmtuska are you coming from out of state, or are you in Minnesota? Will you be going to the clinic first or hospital? The reason I ask is because if you will be at the clinic for appointments and additional tests, your daughter may become very tired in between. There are patient quite rooms at the clinic on the subway level down the hall from the information desks. I would use them a lot, they have reclining chair and blankets and the rooms are kept dim. Hang in there!

Hi, my 15 year old daughter is going to be scheduled for the CT angiogram to check for MALS. I am curious to know if there was a certain incident that triggered the beginning of MALS symptoms for you.

@jamorris9

Hi, my 15 year old daughter is going to be scheduled for the CT angiogram to check for MALS. I am curious to know if there was a certain incident that triggered the beginning of MALS symptoms for you.

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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.

@jamorris9

Hi, my 15 year old daughter is going to be scheduled for the CT angiogram to check for MALS. I am curious to know if there was a certain incident that triggered the beginning of MALS symptoms for you.

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I am very curious if you think something triggered it for your daughter? I there an event that you remember? Nothing can be ruled out, as a cause, although some believe we are born with the defect, I do not now if there is another trigger, or if it gets worse as we grow. I do wonder if hormones play a role or another environmental factor. Please know this is just guesses on my part, but parents really know there kiddos best, very curious to hear your thoughts. The only other thing I can think of is second hand smoke, I have never smoked in my life, but both my parents did when I was going up.

@kanaazpereira

Hello @lmtuska,

I’m sorry to hear about your daughter’s diagnosis, but so glad that you’ve come to the Connect Community.
MALS is such a rare disease, and because of the variety of symptoms, it can often be misdiagnosed. I’m confident that @kariulrich will join in with some answers and insight about her experience with MALS. I would like to tag @afternoonnapper1 too, who had discussed blockage of the celiac arteries, in the past.

In the meantime, I would also encourage you to read this article about research done at Mayo Clinic which discusses the effectiveness of endovascular repair involving branches of the celiac and superior mesenteric arteries: http://mayocl.in/1OS5tAf

@lmtuska, if you have any questions about coming to Mayo Clinic, please feel free to ask; we are here to help you. How has your daughter been coping with this condition, especially with regard to eating?

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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

@jamorris9

Hi, my 15 year old daughter is going to be scheduled for the CT angiogram to check for MALS. I am curious to know if there was a certain incident that triggered the beginning of MALS symptoms for you.

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Hello @jamorris9,

I see that our Mentor @kariulrich has shared some great information; I also wanted to welcome you to Connect, and let you know how glad we are that you’ve come here to find some support.

I hope @lmtuska will also join in with some insight. What symptoms did your daughter have, @jamorris9?

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