@susanf, I have a question for you if you don't mind. Are you going to a consult with a vascular surgeon? MALS involves the ligament, mesenteric ischemia can be different, or a result of mals. The most important thing is you want to make sure you have a knowledgeable surgeon if indeed it is MALS.

So glad I found this group. I have a lot of the same symptoms as a lot of you and have seen two vascular surgeons. No surgery now, they are waiting for me to get worse. I have Mesenteric ischemia and cannot find a group for it. I feel like a ticking time bomb. Do you wait until it becomes an emergency or find someone who will do surgery now in order to insure I don't lose part of my intestines?

Welcome @grandmajo,

I'm so glad you've joined the Connect community. I'd like to introduce you to @susanf and @jmmb as they've both written about mesenteric ischemia, and also to Mentor @kariulrich who may have more insights to share.

I encourage you to read this information about the chronic mesenteric ischemia; both links are from current resources, and I hope they will give you some more information:
– https://www.uptodate.com/contents/chronic-mesenteric-ischemia
– http://www.acc.org/latest-in-cardiology/articles/2016/12/20/07/12/role-of-endovascular-therapies-in-chronic-mesenteric-ischemia

Another incredibly informative resource is this discussion on Connect:
– https://connect.mayoclinic.org/discussion/we-need-awarenesspreventionresearching-on-very-rare-condition-smas-superior-mesenteric-artery-syndro/

@grandmajo, when were you diagnosed with mesenteric ischemia? Mesenteric ischemia can be either chronic or acute; have you been told what type of ischemia you have?

Hello, I was diagnosed about a month ago in the ER. I had been having pain in my abdomen for several days and a CT scan showed occlusion of the celiac and Mesenteric arteries. I have been to a vascular surgeon locally and also one at Northwestern Memorial in Chicago, Illinois. Neither of them want to do surgery until I start losing a lot of weight, severe nausea, etc. It's mind boggling and I don't know anyone who has dealt with this. It is called chronic Mesenteric aschemia.

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.....

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.

@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?

This 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.