Median Arcuate Ligament Syndrome (MALS)

@kariulrich I am so confused and upset right now I am hoping you can help me. I just got back from my surgeon appt. Thank goodness my scan was good . SMA stent wide open, and Celiac had a little narrowing, but it is fine and my numbers have been way higher. My problem/concern is I still have symptoms. I had such pain when they were doing the ultra sound. My surgeon said he doesn't think those symptoms are coming from my arteries. He doesn't know. He was great, spent so much time answering my questions. (broke down crying, and I know he felt bad, I felt bad for him then....) I finally had my post op notes from my first surgery in Feb. 2014. I never really knew what was done except the arteries were smashed by the diaphragm and now fixed. The surgeon at the time explained all to family. My mom had beginning dementia then and my dad just wanted to know if I was okay, same with my kids. First post op apt, I was still drugged up and don't remember much except surgeon was really excited because it was so rare. Then second apt was right after my dad unexpectantly passed away and I was in such a fog. They told me arteries were narrowing again, I didn't listen or do anything. My point is I would have asked so many questions, like if some of the things done could be way I have continued pain. I ask new surgeon and he said could be nerve damage, doesn't know if he ganglions taken out, wasn't mentioned in report. He did have to cut the diaphragm so nerves come off of that that could be damaged making one lung paralyzed. I have hard time taking deep breath a lot. GI dr. says nothing wrong. I don't get it. I know there is visceral sensitivity but all this, nausea, bloating pain, constipation, you know the list. Does your dr. believe even though all tests are clear, your pain still comes from MALS??? I feel like I am going crazy again...No one understands what it is like except you guys. Saturday will be 4 years since my first surgery, and I have been sick and had pain every day since then.
This is what my post op said I had for procedure: dissection and freeing of celiac artery compression from left crus of the diaphragm and patch angioplasty of sma with limited endarterectomy through a thoraco-retroperitoneal approach The diagnosis says: Chronic mesenteric ischemia with extensive diaphragmatic compression of the celiac and superior mesenteric arteries and focal fibrotic stenosis mixed with atherosclerotic plaque just beyond the origin of the SMA
I have also had so many other names: chronic ischemia of celiac and sma, chronic stenosis and others.
Kari I am so confused. I know I have to go for ultrasounds every few months to check on stents. Of course if pain sooner. Well I always have pain so how do I know. Especially now since he doesn't think it is coming from the arteries since they are open. Please tell me I am not going crazy.
Oh and he said the celiac block would come from their pain management dept. or GI, not him. I thought that was weird. And I am getting the DNA testing....
Jill

Hi Jill @jmmb,

I can only imagine your resilience to cope daily with ongoing pain! While we wait for @kariulrich. I encourage you to read this information about the complexities of chronic mesenteric ischemia; both links are from current resources, and I hope they will give you some insight, and reassurance:
– 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/

@palsan2011 I can speak from my experience, I have had two open surgeries from MALS, about 3-4 years apart. I do not regret the surgeries as they improved my quality of life tremendously for about 3 years after the surgery. Day and Night comparison with pain, eating, energy. Unfortunately the pain has returned once again for me. With that said, many people go on to be symptom free and we just do not here from them. For a group of us MALS becomes a chronic battle. I am so happy that we have each other. Some days are really good, some days are what I call pajama days. For your daughter since she did not have open surgery, there is a possibility that she needs a bypass which may help. I would recommend that she sees a vascular surgeon that has treated many MALS patients, and to discuss if she is a good candidate. There are parameters that determine an idea candidate. It is NOT an easy surgery and should not be taken lightly. Also there is chance that she may not find relief. Please ask any questions, I would be happy to answer to the best of my ability.

Jill, @jmmb, YOU ARE NOT going crazy.... your symptoms are very real and what you are experiencing is something I and many others before you have been through! My heart breaks because I know what you are going through... I know how it is to break down in tears in the vascular surgeon's office. We are the chronic MALS patients, and honestly more needs to be done to support and care for patients like us. I am all over with this post, so forgive me... he is right ... all celiac blocks come from the pain management group. I have found the pain management the most compassionate of all the groups I have seen. I know you are confused... this may not be of any help... but I am in the same boat. So we both need to take a step back, take a deep breathe and look at what we are dealing with one step at a time. 1. Pain, we have to get that under control. Have you had a celiac block? That is definitely something to consider, although it may take several blocks to be effective. Also, medication... that is not a permanent solution (although in some cases I think should be a permanent solution) but at least it can give you temporary relief. 2. Nutrition, this needs to be addressed also, the more pain we have the more weight we lose, malnutrition sets in and fatigue. What I have found... and I know this is not a great solution, but I drink 1 redbull (not diet) in the afternoon. The sugar and the caffeine along with the B vitamins seem to keep me from lying in bed all day. I try and eat nuts, string cheese with it to get a source of protein. 3. Sleep, are you sleeping? Another strange thing that has helped for me... because our calorie intake is so low in the middle of the night I am starving!!! So now I keep 2 sticks of string cheese by my bed to eat when I wake up with severe hunger. What is nice about cheese vs other foods is it is not hard on your teeth. I know all these suggestions sound completely off the wall, it becomes survival mode. Prior to my second surgery, all my tests came back relatively good... ultrasound, CT scan, Functional MRI did not show increased velocities. It was when they did exploratory surgery that they found a small growth of tissue in my graph, they were not convinced that this was 100 percent the cause of my pain, but they revised the graft, in addition to removing scar tissue and injecting ganglion tissue with steroids. Chronic mesenteric ischemia... damage is done. How to move forward? WE must advocate for ourselves and one another.

Hi Kari, @kariulrich, thank you for responding and everything you said. I really needed to hear that right now. I never did have a celiac block, but I am going to try. It's just that if my surgeon doesn't think my pain is from the arteries because there is flow, I get all confused. He did say there can be nerve damage. Plus we don't know if the ganglion was removed. My surgeon now has never done an open surgery and not many MALS patients have been even seen there. He has done stents and opening of those. He sees it as plumbing, and the pipes are open. The velocities, flow, are not where they should be, but much better then they were and getting enough blood flow. My questions would be then what about the exhaustion, tingling fingers and toes things like that. He doesn't believe that has anything to do with MALS. I am going to a cardiologist hopefully sooner than the May 17 date. Did you have the same surgeon for all your surgeries? I think what was done on my very first surgery which was very extensive, would effect pain and things today. He just wants to focus on the arteries now and go forward. I get what he is saying but I said there must have been damage done from prior to surgery and he said no because there was flow, just the sections in the arteries were blocked. That doesn't make sense to me. That's why I think he may not totally understand MALS. He is wonderful, takes so much time to answer my questions, but is MALs so much different then any blocked artery? I would think so. I also have a lot of scar tissue. I can't bend to my left side It feels like a slab of cement is under my ribs. Sometimes it can really hurt. It is still hard for me to lay on my left side, 4 years later. I wonder where the stents are if that is where all the work was done and if could have seen if there was any damage like you had in a sense. I don't know why he said there is no way of knowing if the ganglions were removed.
I like your idea of the cheese at night. I am afraid of gaining weight. I had gained 40 pounds after my surgery, but drs. believed after so many tests, and endocrinologist, that is was from stress. Dad passing, mom with dementia, sisters fighting me trying to take me to court, mom living with me and then she passed, all while going through this. I am sure that did not help. This all started about 5 months after surgery. About a year ago, I basically hit rock bottom, lost all my family except my wonderful 2 children who I wouldn't be here right now if it weren't for them. I started walking eating better and saying this is not going to get me, I will fight it. Problem is I don't know what I am fighting. You know what I mean? I lost the weight. I think I never had the issue of weight loss because I always had stomach issues and my stomach always hurt, so I ate little and adjusted my whole life. They said I wasn't typical in symptoms. I did and still do have fear of eating because I know it hurts. I feel so bad for people that can't keep it down or on feeding tubes. Then I feel like I should be thankful, those poor souls. You and this site really have been a god send for me.
I have joined MALS PALS and MALS community. I never had facebook so just got one to join so I am not really good at navigating it and seeing messages and such. However many members have talked about a DR. Hsu in Conn. who has done wonders for many people. Many have traveled to see him. Have you or anyone reading this heard of him?
Well I am writing to much. I need to take a nap...Thank you so much Kari. Yesterday when all this was happening I knew I had to get on here for help, I couldn't give up and think I'm crazy. Thank you to anyone that has listen (read) this long venting of sorts.
Oh my first surgeon even had a paper published on me. It has pictures and all. I could only get the abstract, but I asked my surgeon to print it for me since he had access and he did. I would think he would want to read it and he didn't say anything. Who Knows.....

@kanaazpereira thank you so much for your support and the information. I read one so far and I do feel more reassurance from it. I look forward to getting into the rest of them. Thank you and this wonderful site!!

I was wondering if anyone knows if MALS pals is the same as MALS community? I recently joined both, but it seems like I am just getting mals community. @kariulrich I know you have mentioned the site so maybe you know???Thanks

@kariulrich I just wanted to let you know I read the published article my original surgeon wrote about me. It was very interesting and reassured me that I do have MALS so I'm not crazy. First he said that mals is/can be a cause of chronic mesenteric ischemia. He said I had chronic mesenteric ischemia due to compression of both the celiac and sma arteries. He also said that mals is a rare and unusual disease, and 2 vessel is even a rarer variant. (speaking of me) He did mention the ganglion, but it sounds like it wasn't removed. He said 'release of the celiac ganglion'. What I did find interesting, I don't know what it would mean though is he said, "It is unclear why peak systolic velocities didn't normalize completely given resolution of patients symptoms and normal appearance of Celiac and SMA. " So it seems 4 years ago even after surgery something wasn't quite right. I did have significant narrowing at 6 months post op. My original surgeon is a professor and chief of vascular surgery at Baylor College now. I sent him an email today asking if he could help me. He should remember me since it was an unusual rare case and he wrote a paper. I would think he would be interested to see what happened. Keep your fingers crossed. Also have you or anyone reading this heard of Dr Hsu, a vascular surgeon in Conn. I am not sure if I asked this already. Many people on the Mals community have recommended him after having one or two surgeries already. He will review your case and then contact you. It is about a 2 month wait for his call, but everyone has said well worth the wait. He specializes in MALS. It is so hard to find a surgeon that understands and done surgeries for MALS patients. People have traveled from all over for him.
I hope you are doing well. I am going to keep going forward and looking for answers. We have to educate ourselves and support each other and I am so appreciative of this site.

I may have MALS. Just had testing for vein insufficiency in my legs and Pelvic congestion syndrome. I have suffered for years and have had GI type symptoms, pelvic pain with leg pain most of my life. 6 episodes of severe pain w eating for 6 days over 8 mo period w 40lb weight loss and now a lot of nausea and upper right quadrant pain, everyday. Will be meeting with my doctor Friday to see what compressions I may be facing. Any questions I should ask?

@jmmb would love to read the case study your surgeon wrote! I have heard of Dr. Hsu, do not know enough about him to give an opinion. I will say that I have heard both positive and negatives. I recommend that patients feel completely comfortable with their surgeon, find out any statistics they can. It is such a big surgery, and sometimes we forget to do all the research, we just want a quick cure or answer especially when we are in pain.