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?

@kariulrich, have you heard of any research in regards to the effects on the cardiovascular system after releasing the compression? My BP seems to drop throughout the day as I feel light headed. I’m thinking it could be post surgery, possibly as I’m just over 4 weeks recovery.
Also, I was wondering how you were doing? A few posts back you were mentioning that you were going back to doc regarding a block?

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@blessedgma

@kariulrich, have you heard of any research in regards to the effects on the cardiovascular system after releasing the compression? My BP seems to drop throughout the day as I feel light headed. I’m thinking it could be post surgery, possibly as I’m just over 4 weeks recovery.
Also, I was wondering how you were doing? A few posts back you were mentioning that you were going back to doc regarding a block?

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@blessedgma I have not heard of any research on the cardiovascular system post compression. I believe I asked my vascular surgeon that question and there has not been much but case studies here and there. I wonder if it brings out a POTS in some cases, because several patients have described feeling the same way. I do believe that MALS surgery has an effect on the autonomic system. Thank you for asking how I am doing, I am currently losing weight again, having pain after eating and with exertion. I have been working with my primary physician and just seen an amazing cardiologist at Mayo Clinic. Dr. Sharon Hayes. We are in the midst of a cardiac work up to make sure it is not my heart, but truly a MALS situation. The symptoms are so similar. So far my cardiac work up is good. Back to your recovery, you are still in the very beginning phases of your recovery, it was not until week 8-12 that a few things started to normalize slowly! VERY slowly… It is a frustrating recovery because of the long recovery time. Even after 12 weeks it was still difficult for me, each month I would get stronger and feel better and at a year mark it was good. I know that sounds disheartening, but the milestones you make in recovery are so worth the end result of being pain free. To eat that first meal out with friends or family and forget that you have MALS is a freeing amazing feeling! Hang in there. Make sure you are getting enough fluids in, and salty foods… if the symptoms continue please let your doctor know. You may be dehydrated, or having some dystonia. This is a good link to read about POTS and symptoms associated with it: http://www.dysautonomiainternational.org/page.php?ID=30 So good to hear from you! Keep us updated!!

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Hi I was wondering if anyone has symptoms of lightheadedness often. I had an angio with a balloon done in my stent in the celiac this past Oct. I did feel relief, but I am starting to feel pain in my chest again. It is the same pain I felt before the procedure. It is scary and frustrating. I am scheduled to go in for a scan the end of Jan but if this continues I may need to go earlier. I am light headed often and wondering if this could have anything to do with the compression. Just wondering if anyone else has felt that as well. The bloating after eating is also getting worse. I am so confused if it is sibo or not still.
@kariulrich I was wondering how you were doing. I haven’t been on the site for awhile getting ready for the holidays and resting. Has the Cymbalta been helping? Hope you are doing well.

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@jmmb

Hi I was wondering if anyone has symptoms of lightheadedness often. I had an angio with a balloon done in my stent in the celiac this past Oct. I did feel relief, but I am starting to feel pain in my chest again. It is the same pain I felt before the procedure. It is scary and frustrating. I am scheduled to go in for a scan the end of Jan but if this continues I may need to go earlier. I am light headed often and wondering if this could have anything to do with the compression. Just wondering if anyone else has felt that as well. The bloating after eating is also getting worse. I am so confused if it is sibo or not still.
@kariulrich I was wondering how you were doing. I haven’t been on the site for awhile getting ready for the holidays and resting. Has the Cymbalta been helping? Hope you are doing well.

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Happy Holidays @jmmb! I do have lightheadedness from POTS syndrome, I do wonder if the celiac plexus nerves play a role?? There are several others with MALS and POTS although I do not know if it is common. I just actually wrote one of my school assignments on this very topic and found a great article that explains POTS: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5267948/ I know it is very difficult to distinguish MALS pain from chest pain. Do you have a cardiologist you can work with? I worry with not knowing if the pain is chest vs MALS and the dizziness… Please do not hesitate to get worked up. Your health and well-being is a priority! The Cymbalta has improved my mood, however it has not helped with the pain at all. I am on a low dose so we will increase it after the holidays hoping that it gives some relief. I am so sorry about the bloating… it is so uncomfortable! I have several sizes of jeans because I never know what size I am going to be on any given day. I also stopped wearing belts or anything that puts pressure on my abdomen. I hope that you are able to find some relief over the holidays. Please keep us posted!!

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Thanks @kariulrich and Happy Holidays to you as well!! My primary also suggested a cardiologist, but she knew I was tired with all the testing. I still need to do the pharmacology testing thing you did. I start back with testing in Jan. I did enjoy the break off. Do you suggest I get a primary at mayo? I love my primary but since I moved she is 1 1/2 hrs away, but we also email. I love my vascular surgeon, but not my GI dr. Oh well.
Maybe upping your Cymbalta dose may help. I remember it did help me, but like I said so many years ago, don’t know if it even helps anymore.
So are you going to school too? I see you said for a paper you are doing. How do you have the energy!!! I admire you for that!! I am on social security disability. I would love to go back to teaching, but even on a good day I don’t think I could do it, let alone having 5 in a row and not paying for it with being sick for weeks after……
Well have a wonderful holiday and Happy New Year if I don’t talk to you by then. Maybe they will find some answers in 2018 for all of us!!

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@kariulrich I haven’t seen any posts from you, I hope you are doing ok. I wanted to ask you how I go about getting the pharmacology testing done. I know you told me who could help and I went through all the posts and I thought I saved it, but I can’t find it. I am wondering if some of my meds just aren’t working anymore since I’ve been taking them for so long. Well I really hope you are doing well, got some rest and had a nice holiday.

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@jmmb

@kariulrich I haven’t seen any posts from you, I hope you are doing ok. I wanted to ask you how I go about getting the pharmacology testing done. I know you told me who could help and I went through all the posts and I thought I saved it, but I can’t find it. I am wondering if some of my meds just aren’t working anymore since I’ve been taking them for so long. Well I really hope you are doing well, got some rest and had a nice holiday.

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@jmmb! Hello!! Good to hear from you. How were your holidays? How are you feeling? I am sorry to hear about your meds. I am doing good. I have not been on much, my current class is wrapping up now… so I will be on Mayo Connect a lot more in upcoming weeks. Thank you for thinking of me. The pharmacology testing can be done through Mayo Clinic, it also can be done by asking your doctor to do it through this website: https://oneome.com (The website has a lot of helpful information. This is the same company that Mayo used for my testing. I also I believe they are affiliate in some way to Mayo) The pharmacological testing can tell you how you metabolize many medication, but not all. The information you get from the testing helps doctors determine what meds are best for you. If you have been on a particular medicine for an extended period of time your body can build up a tolerance to them and they are not as effective. What has helped me in the past when this has happened is to take a medication holiday, so I would stop under the guidance of my physician and resume them after several months. This is something you should talk to your doctor about, you may need a different class of medication during the “med holiday”. Also some meds cannot be stopped abruptly. This is Mayo Clinic’s link on testing: http://mayoresearch.mayo.edu/center-for-individualized-medicine/drug-gene-testing.asp It is difficult when meds stop working effectively!!

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@jmmb

@kariulrich I haven’t seen any posts from you, I hope you are doing ok. I wanted to ask you how I go about getting the pharmacology testing done. I know you told me who could help and I went through all the posts and I thought I saved it, but I can’t find it. I am wondering if some of my meds just aren’t working anymore since I’ve been taking them for so long. Well I really hope you are doing well, got some rest and had a nice holiday.

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Hi Kari, I’m doing a little bit better. ( That means the pain and bloating are less severe and I can sleep at night.) I’ve been taking Lyrica 50 mg. capsules, 3 X’s a day along with 2 caps of Tylenol, 500mg each, 3 X’s a day. Lyrica is for diabetic nerve pain and it has made a difference in how I’m feeling. I’m sorry to hear your meds are not working. New Mexico has legalized medical cannabis and I’m in the process of getting approval from the state authorization office. I’ll keep you posted on this. As far as pharmacology testing goes, I’m not sure what you mean. I have however gotten blood tests to check my mineral and vitamin levels given all the drugs I take and being cautious about depleting my system. This I’ve gotten with my doctor’s referrals to Tricore Testing. I would like to recommend the Cleveland Clinic in Ohio. Their Vascular Institute has been very involved in treating MALS patients for quite some time now. I plan to go up there in March to see Dr Rodriquez. There are no doctors or surgeons here in NM who know how to treat MALS patients. I need a treatment plan. I need to know what else can be done. Thank you Kari for your kindness and caring in keeping up with our community.
Lou D’Amico

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@jmmb

Thanks @kariulrich and Happy Holidays to you as well!! My primary also suggested a cardiologist, but she knew I was tired with all the testing. I still need to do the pharmacology testing thing you did. I start back with testing in Jan. I did enjoy the break off. Do you suggest I get a primary at mayo? I love my primary but since I moved she is 1 1/2 hrs away, but we also email. I love my vascular surgeon, but not my GI dr. Oh well.
Maybe upping your Cymbalta dose may help. I remember it did help me, but like I said so many years ago, don’t know if it even helps anymore.
So are you going to school too? I see you said for a paper you are doing. How do you have the energy!!! I admire you for that!! I am on social security disability. I would love to go back to teaching, but even on a good day I don’t think I could do it, let alone having 5 in a row and not paying for it with being sick for weeks after……
Well have a wonderful holiday and Happy New Year if I don’t talk to you by then. Maybe they will find some answers in 2018 for all of us!!

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@jmmb I did not realize I missed this post! I am so sorry, I apologize. My primary at Mayo Clinic is Dr. Sundsted: https://www.mayoclinic.org/biographies/sundsted-karna-k-m-d/bio-20202046 I really like her, she is easy to talk to and is very helpful at explaining things. She also listen to my thoughts, which is very important to me. I think we have made a great team. I am going to up my Cymbalta soon, we are doing changes in my meds gradually. I really like the med so far, it has been helpful for my mood… not so much for the pain, but increasing it should help. I am in school, but don’t let that fool you… ha ha … I am taking one class at a time and taking extended breaks between classes. I am finally getting my BSN at age 50! I did apply for SSD several years ago, it was a very long process but was denied despite my physicians recommendations. I do have a difficult time managing my energy levels, I take it day by day. My classes are all online which is helpful, many times I am doing classwork on the computer in bed. Mayo Clinic Rochester has a program to help manage energy levels… I am not that familiar with it, but it is a goal of mine to go through the program. I hope your 2018 is going well!! Sending hugs, and again I apologize for taking so long to reply.

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@ruudolpho Cleveland Clinic has an amazing vascular clinic, I have had the opportunity to follow a patient through their appointments many years ago and I have to say they did a tremendous job in caring for this patient. I am happy to hear the Lyrica has given you some relief, and the ability to sleep at night. I do think not sleeping contributes to the pain. Have you noticed any side effects from the Lyrica? May I ask if you have lost any additional weight? I just posted several links on a response to @jmmb about pharmacogenetic testing, I will post them here also. I am sure Cleveland Clinic has this type of testing, for me it was helpful to know how my body metabolizes meds and which meds are better suited for me. It is so time intensive and not much fun going through different meds to see which ones work. This is the company that did my testing at Mayo, you do not need to have it done through Mayo, but you do need a doctor to order it: https://oneome.com also this explains what testing can help with: http://mayoresearch.mayo.edu/center-for-individualized-medicine/drug-gene-testing.asp It is rather complicated and I found it helpful to go through the individualized medicine department. I am very interested to hear what you think about medical cannabis! I have never had vitamin and minerals checked, that is very smart thing for all MALS patients! I appreciate you sharing that, I would think as our bodies are so malnourished this would be helpful in getting out health and well-being back on track. It is good to hear from you Lou!

Liked by jlfisher56

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@kariulrich

@ruudolpho Cleveland Clinic has an amazing vascular clinic, I have had the opportunity to follow a patient through their appointments many years ago and I have to say they did a tremendous job in caring for this patient. I am happy to hear the Lyrica has given you some relief, and the ability to sleep at night. I do think not sleeping contributes to the pain. Have you noticed any side effects from the Lyrica? May I ask if you have lost any additional weight? I just posted several links on a response to @jmmb about pharmacogenetic testing, I will post them here also. I am sure Cleveland Clinic has this type of testing, for me it was helpful to know how my body metabolizes meds and which meds are better suited for me. It is so time intensive and not much fun going through different meds to see which ones work. This is the company that did my testing at Mayo, you do not need to have it done through Mayo, but you do need a doctor to order it: https://oneome.com also this explains what testing can help with: http://mayoresearch.mayo.edu/center-for-individualized-medicine/drug-gene-testing.asp It is rather complicated and I found it helpful to go through the individualized medicine department. I am very interested to hear what you think about medical cannabis! I have never had vitamin and minerals checked, that is very smart thing for all MALS patients! I appreciate you sharing that, I would think as our bodies are so malnourished this would be helpful in getting out health and well-being back on track. It is good to hear from you Lou!

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I have not noticed any side effects from the Lyrica. I have in fact gained weight. At 6 foot one, I’m now at 120 pounds. I was down to 108 pounds in July after my surgery. My appetite has pushed me to eat more, but I still struggle with weakness and exhaustion. I will keep you posted. Lou

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@jmmb

@kariulrich I haven’t seen any posts from you, I hope you are doing ok. I wanted to ask you how I go about getting the pharmacology testing done. I know you told me who could help and I went through all the posts and I thought I saved it, but I can’t find it. I am wondering if some of my meds just aren’t working anymore since I’ve been taking them for so long. Well I really hope you are doing well, got some rest and had a nice holiday.

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Hi @kariulrich , I’m glad to hear back from you!! You have been so helpful to me and I am sure many others with great information. I was worried maybe you had a procedure or something done or just feeling lousy. I know I have times that get really bad, I am lucky to get out of bed. My holidays were quiet, my kids and us, but really nice. How were yours?
Well thanks for the info again. I am going to my primary next week so I wanted to let her know about the pharmacological testing. I look forward to reading and exploring those links as well.
Sorry that the Cymbalta isn’t helping with the pain, but I know with me they started a low dose and then increased so hopefully that will help you.
Congratulations on your BSN! That is great. I really miss working (being with the kids, I was a teacher for special ed). I wonder if I will ever be able to go back to it. I did renew my certification last year to try and stay positive. As far as the SSD, you should try again. They always turn you down the first time. I was lucky, my long term disability with my employer had this group called the Advocator. They helped with everything. All the papers, any questions and right before my hearing they got me a lawyer. I was turned down twice and at the hearing they approved me right then and there. I then got medicare, but it isn’t as good as I thought. For some crazy reason the state of Arizona and I think maybe 2 or 3 other states, don’t let you get a supplement plan if you are on social security disability. Kind of the stupidest thing. Your sick, you can’t work obviously and you need medical attention……how are you suppose to pay for it. Crazy. Anyway I digress….I don’t know your exact situation and all but I would encourage you to apply again. If you need any help and I can help you in anyway, please let me know.
Always great to hear from you. Good luck with the meds and thanks again for the info!!!

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@kariulrich

@ruudolpho Cleveland Clinic has an amazing vascular clinic, I have had the opportunity to follow a patient through their appointments many years ago and I have to say they did a tremendous job in caring for this patient. I am happy to hear the Lyrica has given you some relief, and the ability to sleep at night. I do think not sleeping contributes to the pain. Have you noticed any side effects from the Lyrica? May I ask if you have lost any additional weight? I just posted several links on a response to @jmmb about pharmacogenetic testing, I will post them here also. I am sure Cleveland Clinic has this type of testing, for me it was helpful to know how my body metabolizes meds and which meds are better suited for me. It is so time intensive and not much fun going through different meds to see which ones work. This is the company that did my testing at Mayo, you do not need to have it done through Mayo, but you do need a doctor to order it: https://oneome.com also this explains what testing can help with: http://mayoresearch.mayo.edu/center-for-individualized-medicine/drug-gene-testing.asp It is rather complicated and I found it helpful to go through the individualized medicine department. I am very interested to hear what you think about medical cannabis! I have never had vitamin and minerals checked, that is very smart thing for all MALS patients! I appreciate you sharing that, I would think as our bodies are so malnourished this would be helpful in getting out health and well-being back on track. It is good to hear from you Lou!

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@ruudolpho what is so funny about MALS for me, I do have bouts of nausea at times, but what is difficult is that I get so hungry!!! The food adversion is the only way to completely stop the pain. For me taking Tramadol has worked to prevent and limit the pain to some degree. The malnutrition is not easy to bounce back from… hopefully as your nutrition improves so will the weakness and exhaustion. I do believe it takes a full year to reach recovery, and maybe longer to get back your strength. You are in my thoughts. Always good to hear from you Lou!

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@jmmb

@kariulrich I haven’t seen any posts from you, I hope you are doing ok. I wanted to ask you how I go about getting the pharmacology testing done. I know you told me who could help and I went through all the posts and I thought I saved it, but I can’t find it. I am wondering if some of my meds just aren’t working anymore since I’ve been taking them for so long. Well I really hope you are doing well, got some rest and had a nice holiday.

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@jmmb Thank you always for your words of encouragement, they mean so much to me. If you can keep up your certification…. you never know. Even if you never use it again, it can give you a source of hope. That is why I have kept up my nursing license. I thought if I gave it I would give up hope of feeling better. I don’t know if that makes sense to you? I did not know that supplements were not available in several states, that is so disappointing. It is no surprise to me you are a special ed teacher, you are a nurturing and caring individual. ❤️

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@jmmb

@kariulrich I haven’t seen any posts from you, I hope you are doing ok. I wanted to ask you how I go about getting the pharmacology testing done. I know you told me who could help and I went through all the posts and I thought I saved it, but I can’t find it. I am wondering if some of my meds just aren’t working anymore since I’ve been taking them for so long. Well I really hope you are doing well, got some rest and had a nice holiday.

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@kariulrich I know exactly what you mean!! You have to hold on to some sort of hope that there will be some part of your old life coming back. It seems like it was a whole different life. Thank you so much for your kind words. Talking with you gives me hope. I did talk with my primary dr. and she is ordering the pharmacology testing. That will be interesting. They do most of my meds. She also agrees that I should see a cardiologist, so she sent in the referral to mayo. I’ll see what happens there. Yesterday I was in the ER all day. I have back issues but I was up all night with such pain, I couldn’t lay down, sit or stand. My back hip and legs hurt so bad , almost like a piano fell on my lower back and smashed it. I don’t even know how to explain it. My fingers were and still are tingly. I went to a Banner hospital er 10 min from my house. They wanted to make sure I didn’t have the flu so they did chest xray, nasal swab and some labs. I am like ok but what about my legs hip and back…..They gave me pain meds and sent me home. Pain meds worked, but why did that happen I wonder. To me with all that is going on, that is kind of scary. Maybe cardiologist will know, or I have a follow up with my vascular surgeon on the 31st. It is just so frustrating, like we all know, I feel like no one really listens to what I am saying, or they don’t talk to each other at Mayo. That was my biggest disappointment. I need to address that again when I am at my next appointment. I love my surgeon, it is my GI dr I am not pleased with, but hoping if they communicated that would help. I will see what happens once cardiologist gets involved. I am just really getting tired of it all.
After my surgeon visit I am thinking of switching out my Cymbalta with the savella, same class and used for fatigue and fibromyalgia. maybe that will help. How are you doing with the increase in the Cymbalta? I think I have been on it just to long. 20 years probably for me I think.
Well thank you so much again. I hope you see how much you have helped and continue to help me in this “journey” and the many others I read here as well….

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