Median Arcuate Ligament Syndrome (MALS)

@ruudolpho I am so HAPPY you brought up the question about pain medication, this is a topic that weighs heavily on my mind as I too use pain medication to maintain a quality of life that is enjoyable. So, in my experience I have found pain medication has helped in several ways. I use Tramadol, the side effect of possible constipation helps control the horrific diarrhea that some of us MALS patients experience on daily basis. I believe both pain and malabsorption of food leads to our significant weight loss, so pain medication slows down the gut helping alleviate this problem. Also, I have found if I take my meds prior to eating the pain is substantially less and I am able to eat nutrient dense foods compared to eating a diet mainly of carbs. If I use it as pain rescue after I have eaten is does not work as well. I know each of us are different and metabolize medication differently, so my experience may not be the same as yours, however with the chronic MALS patient's I have spoke with we all have had success with pain meds. Here is the problem, with today's political climate on the perceived opioid crisis patients have to deal with shame, being stigmatized and made to feel like less of a human because of our pain. You obviously cannot afford to loose more weight, and I am happy to hear you have a reasonable physician that is addressing your pain. In my personal humble opinion, for you, like me, we are chronic MALS patients, I think it is reasonable and therapeutic to try pain medication and see if it works for you. For me, I have also lost a significant amount of weight, have become malnourished and have had exhaustion despite 2 successful surgeries (I say successful because the pain went away for 3 years, however like you the symptoms returned) During the the successful years my weight maintained at 155-160 I am 5'7 - I preferred the heavier weight as I had more energy and could eat normal meals (Still had bowel issues). My lowest weight was about a month ago at 116. I am currently struggling to maintain 120. For me my physicians have changed my medication from preventive to rescue on active ... so we will see how that works. There are few things you need to be aware of in chronic use of pain meds, there is a difference between addiction and tolerance. With long term use your body gets use to the dosage and people find they have to increase there dose for the medication to be effective, this is called tolerance and it is NOT addiction. There are things you can do to help with this if you work with your doctor closely. If you are fearful of addiction let your doctor know. I have been on meds for decades and have not had to increase my dosage, I have been fortunate, each person is different. I just want to say, I believe in some patients pain medication can significantly improve their quality of life, and I do believe it has many benefits for patients such as ourselves. There is a risk for addiction, but that is a risk for many medications, not just pain medication. May I ask, why you are uncomfortable taking pain medications? (I know this is a personal question, so do not feel obligated to respond). I have spoke with so many patients that this is a huge step, and when they find they are useful and improve their quality of life they become ashamed as if they were not strong enough to handle to daily pain that is dished out to them. As a nurse and as a patient I believe our medical community has done a disservice to many chronic pain patients.

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.

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.

Thank you for your encouraging thoughts.

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?

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.

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 @annief . Sorry to hear you are not feeling well. MALS is a really tricky and complicated disease/diagnosis. I don't think any two people are the same. Usually all have general similar symptoms like you have described. My MALS was found by accident. I have always had stomach issues since I was little. Told IBS and had ulcers. About 4 years ago, the pain was so bad I decided to go to the er just for pain meds or something. They insisted on ct scan. The dr. came out and asked if I knew that my arteries were narrowed. I was like I don't know. He said I should see a vascular surgeon. I told my pcp an he got me into a University teaching hospital and with the chief of vascular surgery. I had no idea what was going on. They did the doppler and said my velocities in the celiac and SMA were literally off the charts and I needed surgery right away. I was a teacher and asked to wait for spring break he said no. I thought ok, I took a month off. Wow was I wrong. Now of course mine was different. I had two arteries and they were severely compressed and it was a mess and about 8 hr surgery. I did feel better after. Long difficult recovery, plus a lot of personal stresses, family deaths, which didn't not help. But my arteries were good. However, 5 months later they were narrowing again. My surgery was Feb. 2014, In Sept. 2015 I got stents put into each artery. It would have been best to do a bypass, but I physically could not handle that. I did feel relief again. Then it came back. I also had SIBO, which is a big issue to watch for. I was getting confused of what was what. If that is caught and taken care of, I think it would be fine. Mine wasn't. Oct. 2017 I had a balloon in the celiac. For me this will be a life long thing. That doesn't mean for you. I have heard people have open surgery and in a month feel a lot better and continue on that path. There are many that have had laparoscopic an out of the hospital in like 3 days and done great. It depends on the situation. If you are unsure I would definitely get a second opinion. I think, personally, it should be a vascular surgeon. I have not had luck with GI drs even acknowledging that MALS is causing damage to the stomach. I have heard though some GI drs were great in diagnosis of it.
Sorry not much help. As for eating, I used to try to stay away from certain foods. Honestly it didn't matter. Just depended on the day and how bad my symptoms were. Water is really hard for me. Weird I know, but if I am really thirsty and drink more than a couple of sips, it hurts so bad, even now. I would definitely eat SMALL MEALS and more often throughout the day. If you have a problem with eating, and one day something sounds good and is working, eat it all day, who cares as long as you get something in you.

Well good luck to you. Oh and I was 47 when I was diagnosed and my surgeon said I was young, but I don't think he realized it was truly MALS until he went in and saw the diaphragm compression. I don't think age matters so much as the shape and health you are in. Feel free to ask any questions. Don't know if this helped any....

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?