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?
Interested in more discussions like this? Go to the Digestive Health Support Group.
Thanks @jmmb. Unfortunately or fortunately I guess, I have good days and bad. The less I eat the more better days I have. So of course I am so hesitant to have such a serious surgery. If it were just about the eating, I think I could manage this but then I have the random pain without having eaten or I realize I don’t have the energy I used to. I know that probably won’t change without surgery. Thanks again for your input.
Hi. These symptoms exactly match mine. I have had 8 years undiagnosed except for Small Intestinal Bacterial Overgrowth (SIBO). Can MALS cause SIBO does anyone know or have? I am going to the Scottsdale MAYO clinic next week. Is there anything I should ask them or tell them to help them diagnose this if it is the condition I'm struggling with? Haven't been able to eat for 2 months so living on elemental diet which can even cause pain. Lost a lot of weight. I usually have exacerbations like this that put me in bed with epigastric pain and what feels like overwhelming autonomic nervous system symptoms but usually they come right in days to maybe 2 weeks but never this long so know I'm getting worse and I need a diagnosis. SIBO is not a diagnosis - there is always an underlying cause and I have had most others, except for SMAS, excluded. Diet modification does nothing. Medication, other than pain killers taking the edge off it and lorazepam calming me down, otherwise do nothing. It is very waxing and waning in symptoms, night or day. Exercise, stress and eating anything are the triggers. Sounds just like MALS to me. Should I also ask the specialists there to test me for vascular and connective tissue disorders? Thanks so much, this is all new but hopeful finally
Sorry to hear you are having trouble. I have learned a lot from reading through the previous posts from everyone. I am in Dallas and deciding on what doctor and when I want to plan the surgery. I am sure others here will be able to give you more advice. My symptoms are not as severe as yours (at times) but I understand the frustration and just pushing yourself through to get through the day. Frustrating too is how the symptoms can mimic other problems and trying to find a doctor that will keep pursuing until the right diagnosis is found. Hang in there and keep pushing until you get answers.
I went to the doctors for pain I have been having for years. I have constant pain in my abdominal area. I have several scans done and they believe I have MALS (arcuate ligament syndrome). It’s my understanding they could determine it through scans. The Dr. wants me to get a nerve block if it works he said I have MALS if it doesn’t work I have something else. My question is are there some cases where a nerve block is required to determine MALS?
Welcome to Connect, @patrice207. You'll notice that I moved your message from the Chronic Pain group to this existing discussion about MALS in the Digestive Health group. I did this so you can meet others who are talking about abdominal pain and MALS. I encourage you to read back through the past messages where you'll meet @kariulrich @jmmb @annief and others, and find useful resources and tips that they've shared. Perhaps they can answer your question about how a nerve block may be used to help diagnose MALS.
Feel free to ask questions to help you prepare for your next appointment with your doctor. Have you seen a GI specialist?
Thanks. I saw a GI doc last Thursday and I'm having a Doppler Ultrasound of my SMA and hopefully exclude MALS tomorrow. He doesn't suspect it on clinical grounds though but I want to be sure since we've come all this way to Mayo and I have been diagnosed with Autonomic Instability and Mast Cell Activation Syndrome
Hello @patrice207, welcome. You can determine MALS through certain scans if there is someone reading the scans who knows how to look for MALS. Usually a doppler ultrasound can be done and they will check for velocities of your arteries. Basically your blood flow percentages. Also a ct scan can usually tell as well. I never had a nerve block. I never even heard about it until 3 years after my first surgery. That is for patients that have all the pain and symptoms, and they want to see if there is a nerve involvement. If the block works, then the surgery should work. Mine was a blood flow issue. It can be both. I am sure this is all confusing to you. There is a lot of information out there now on MALS. You can google and read some medical resources. There is also lots of people on here that have been through things as well and can help. Good luck!
Kari, you are awesome.
I'm still hanging in there. Still 109 pounds at 6 foot,1inch. I can't gain any weight unless I can stop the pain and exhaustion.
My doctor has me taking a trial course of oxycodone, 5 mlg., 1/2 hour before I eat. I think it's working but I'm not comfortable about taking opioids. I keep a very close record of when and what I take in a daily notebook. I'm curious if anyone has ever taken opioids before eating and how successful they found it? The MALS surgery did not relieve the pain and exhaustion when I eat. Of course I eat small meals and avoid hard to digest foods.
Hello: My husband was on Opioids for three weeks and lost weight, lost appetite, and had difficulty staying awake. When we transferred to Mayo Clinic (for 3 months opioids were not used. Thank goodness.It was a challenge to find food he liked. He slowly began to gain weight.
I encouraged him to listen to Dr Amit Sood's Mindfulness tape that I listen to regularly. Although both of our medical issues are much different from yours...the lessons learned about how to really relax eased each of our very different pain. Dr Sood has written several
books that are a interest read on the Body, Brain & Mind connection which has helped me heal and deal with breathing.
Our body often need time to heal and if we can learn to incorporate mindfulness and tell our brain to ease the pain and relax
our nervous system we can heal better. I wish you all the best. Oh, Dr Amit Sood has done some entertaining yet helpful talks
that can be found on You Tube. I hope this helps.
Thank you for your encouraging thoughts.