Connect
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?
Like
Helpful
HugInterested in more discussions like this? Go to the Digestive Health Support Group.
Connect
Wow, I did just post in the other place after your post. I really don't understand why they would wait. Are they thinking it is something else? Although if they already said the are completely blocked, I don't get it. When I had my first open, both my celiac and sma arteries where narrowed to the point the velocities were of the charts. I was very thin. My surgeon said I didn't fit the typical MALS patient because weight loss is a big symptom, but non the less, that was my diagnosis. Everyone is not the same. I always had issues with my stomach so I was used to constant pain. I was a teacher and asked if I could wait a few more weeks and do it on spring break and he said no.To many risks, stomach can die off from not enough blood supply. Again I am not trying to scare you, everyone is different, but this does sound concerning to me. @kariulrich what are your thoughts....
-
Like -
Helpful -
Hug
1 ReactionThis doesn't sound good to me. They told you two arteries are completely occluded and third is 75% blocked. I don't understand why they wouldn't consider that an emergency situation. I am not trying to scare you, but I would hate to see anything happen. Is there another vascular surgeon you can go to for a second opinion? Sometimes a good GI dr. will know as well. Unfortunately I can't even find a good GI dr. for GI stuff!!! Please let me know how you are doing.
What type of surgeries did you have and were they successful?
Hello, I haven't had any surgeries. The surgeons I have seen do not want to do anything yet, although I have celiac and Mesenteric arteries completely blocked. The third artery is 75% blocked. I am getting blood flow through several collateral arteries but does not give me completely what I need. . I will see my gastro next week. I really do not know what is going to happen. I have already had two bowel obstruction surgery in the last 10 years. I think due to not enough blood flow.
-
Like -
Helpful -
Hug
2 Reactions@susanf The cramping should get better over time, but it is so going. May I ask are you having diarrhea with the cramping? One thing i tell every patient that has MALS surgery, no matter lap or open.... EAT SLOW AND SMALL AMOUNTS... think you are eating slow? Eat even slower. I know this seems counter intuitive... you have surgery to fix the problem right? However it takes your body months to get use to the quantity of food and additionally the quality of food. The recovery for MALS is very long, and that can be frustrating. For me it the recovery was so gradual and slow I thought maybe the surgery did not work... but then one day out of the blue you realize you have just eaten a meal pain free. It shocks you. There seems to be a tipping point where all of sudden pain is gone and eating resumes to somewhat normal. I believe some MALS patients do end up having chronic issues/symptoms, however the symptoms are more tolerable because of the surgery. I hope this helps!
When my pain was at it worse it would radiate to my back, between the lower part of my shoulder blades. I have heard of other MALS patients with these symptoms and it can be hard to determine if it is cardiac or another artery. How are you doing now?
-
Like -
Helpful -
Hug
1 Reaction@grandmajo ... I replied to an earlier message. I am familiar with mesenteric ischemia, I have ischemia also have had surgery twice. Do you know if there are several arteries involved? Have you had a cath angiogram with pressures?
-
Like -
Helpful -
Hug
3 Reactions@grandmajo very nice to meet you, and I apologize in the delay of getting back to you. Did your vascular surgeons give you a reason why to wait to have surgery. Please do not wait until it becomes an emergency, and you are correct that you can end up with organ damage if you wait to long. What symptoms are you experiencing? Did the doctors explain what to expect if the symptoms get worse and when to notify them? Sometimes we have lived with the symptoms for so long, we get accustomed to living in daily pain. We may not even realize how severe our symptoms really are until damage is done. I am guessing the doctors told you that you have good collateral flow, which is good... however it is also a sign that your organs are not being supplied properly with blood. Are you on any vasodilators?
I haven't heard anything about velocity, I just know that the celiac and Mesenteric arteries are completely occluded and the third artery is %75 blocked. I am having my scans sent to Mayo in Rochester to get their advice and see what they may be able to do. I have read that they treat all Mesenteric Aschemia on some level because it may cause a blood clot in small intestines. My pain is hard to predict, it's off and on. I'm not nauseated all the time an I eat small meals and not loosing any weight yet. Collateral arteries are supplying maybe %50 or so of blood flow that I actually need.
Hello @grandmajo I have heard that a lot and it does seem odd. I don't know if it is because it is a major surgery or what but to me the healthier you are the better to do it I would think. I had kind of the same situation. I was in the er and ct showed my arteries were 'narrowed' as they said and I should see a vascular surgeon. My pcp set me up and that visit they did the Doppler ultra sound and he said I needed surgery asap. Both my celiac and sma velocities were over 600 or 700 don't remember, but he said literally off the chart that he had to make up a number. Did you have anything done that showed the velocities. If the numbers aren't that high they will say you are getting enough blood flow from collateral veins, but when you have 2 arteries involved I wonder. Also there is the ganglion nerves. Some people don't even have any occlusion, but the nerves cause the pain and they need to be removed. You need to find an experienced MALS surgeon which is hard. Have you joined the Facebook group MALS PALS? they have a list of surgeons by state and are a great resource. My surgery was done in AZ. Then a year later stents put in then just a few months a balloon in the celiac. I still have pain. I am not sure if the nerves were removed. I didn't know anything about this until I joined here and MALS PALS. My surgeon is a Baylor College now in Texas and I do have a call into him for a consult. I don't know if that helps any. I would ask for ct with contrast, Doppler ultra sound, and ct angiogram would be best. Good luck and let me know if you have any more questions. I am no expert but been dealing with this for over 4 years.....