Median Arcuate Ligament Syndrome (MALS)

Link to peer recommendations / doctors https://lookaside.fbsbx.com/file/UPDATED%20MALS%20FRIENDLY%20SURGEON%20LIST%204.8.18.pdf?token=AWyptRidNd0VuqcLxpdW14BhozN8m0Ha0HHgt7-hp-RP2OL3p5Fli7rmT6xGv7CyF6vhZWFqXshc3nexnpvarvperKTxuTGoFT__O5QQiWUZB1btXs6xOP6q9wYwJWtZqQnrdBsIq3Q8bjJARdinofV1

There is Facebook group that has put together a list of doctors that they use called MALSPals. I will see if I can get the listed posted here...I have not had much success in the past. On another note, there is a nonprofit working towards better care for patients. In full disclosure I am on the board, but I will continue to volunteer here. I just want everyone to know we are making progress together! The foundation is called The National MALS Foundation, our website will be up soon.

I have not been diagnosed with MALS...but everything else has been ruled out. Is there anyone on this site from Western NY, and if so, what Dr do you use? I am desperate!!! Insurance may be an issue because MALS is so rare. I have not been able to eat w/out extreme pain after for 5 months and have lost about 30 pounds since then. I need a Dr who is knowledgeable!! Thank you, and God bless!

Hi, All. I've been diagnosed with severe narrowing/stenosis of the celiac artery. Today the Thoracic physician said he is still not sure it is MALS because I'm not losing weight. I'm actually in the hospital now, admitted last night from ED. I was sent to ED by PCP, who was concerned my pain could mean ischemia/organ damage given severity and duration I've been in this state. I have many of the symptoms mentioned in this forum - severe abdominal pain (both sides but predominantly left, under/around ribs and radiating to back) nausea lasting for hours and days, shortness of breath, weakness, chest pain, headaches. A CT from an ED visit in September of 2018 revealed stenosis and poststenotic dialation. What a journey to get to this point. Its been an uphill battle, really. I've had to be my own advocate - reading, researching, insisting on being seen and being taken seriously when dismissed and pushing for more testing when something was ruled out. Most important is to maintain hope. I really want to consult another physician/Team. Can anyone give some recommendations? I believe UPMC is the next closest health system to me. Thanks!

I just want to add a comment about pain meds. I had laparoscopic surgery, but had significant internal pain. Gabapentin worked best for me. Healing takes a long time.

My incisional pain lasted 6 months it still gets painful to touch at times ( I believe this is nerve damage, nothing I cant handle but it affects the clothing I wear). What helped me with my incisional pain is using a small pillow to splint my incision. I used it when I walked for at least a month maybe two. I used it also in bed for at least 6 months to help support my abdominal muscles. Gas pains... the dreaded gas pains, oh yes they were not fun. You are doing the right thing slow eating, chew food well, small frequent meals. For pain at home I managed with narcotics to be honest I cant even remember the name of the one I was on post op, but I used extra-strength Tylenol for pain. I have to be careful with Advil because I have a vascular disease that affects my kidneys so I can use it just very sparingly. What helped all my symptoms was walking three times a day short distances... even just around the house. I was so happy to be home, my recovery went so much better once I was discharged. Better sleep, better food... and my family made all the difference in the world. I know the recovery is so long!!! Just keep asking questions... it has been about 4 years now since my last surgery but I will try my best to answer your questions. This may sound silly... I did not wear a bra for at least 6 months, I wore a tank top that was loose on my abdomen. Some patients like abdominal binders, you can get them at any drug store. For me they were uncomfortable. My thoughts are with you!! You will get through this, you will start noticing bigger strides of progress at about 3-4 month post op. Hang in there

So happy you found us... and I am terribly sorry that it has taken me so long to reply! Keep asking questions!! Please, we learn from each other. In my experience, UVA has amazing knowledge of MALS! I am glad you are in an area where there are experts. One of my close MALS friends has had surgery there and they have been amazing. MALS symptoms are not the same for everyone, pain can be different unfortunately there is not a 'typical' or 'case book' presentation if that makes sense. MALS is known to cause problems with other arteries due to severe stenosis in the celiac... it can affect the hepatic and branches of the spleen, and pancreas so your symptoms do not surprise me at all. If your stenosis is severe and with your weight loss the option of surgery is something to consider. The celiac block helps with the pain, however it is temporary lasting days to months (different for each patient). MALS surgery is not a surgery to take lightly, and given that you have been through a hysterectomy a year ago you understand how long it takes to recover. You need to talk about this to the vascular surgeon. There is a group on facebook called MALS PALS they have a list of patient recommended physicians. This is what they have for Virginia: Charlottesville
University of Virginia
Dr. William Robinson
Open
Charlottesville
University of Virginia
Dr. Behrn
Open
Charlottesville
University of Virginia
Dr. Margret Tracci
I hope this helps!!!

Thank you for your posts. I had open MALS procedure January 25/19. Required bypass and graft. 6 days post op, a double sneeze landed me back in e.r. Thankfully, bypass and graft were intact. Discharged to a SNF. I can eat food (yay!) Slow, bland, small amounts. Surgical site is very sensitive, gas pains are intense, back pain is equally intense. I have post op appointment on Monday with Vascular surgeon. I am hoping to get discharged from SNF next week. I think I will feel more comfortable at home. (I must conquer climbing stairs before I can go home) May I ask how long your incision was painful? Did you experience gas pains? Treatment? Which pain medication, other than narcotics worked for you? Any contributors, suggestions, recommendations are greatly appreciated. Much thanks. Be well!

Hi! I just received my CT-A results showing a significant narrowing of the celiac artery. My GI said that "suggests" MALS and referred me to a vascular surgeon. Here's some history on me. I have been nauseous 24/7 since the beginning of August. I have no appetite and can't eat or drink much due to the nausea. I do not have the pain most people with MALS describe. I do sometimes have pain in my back on the left side just under my ribs that radiates around to the front. I am weak, sometimes dizzy, and get tired easily. I have lost 58 pounds. I also have blood in my urine that the docs have not been able to find a reason for. I have had a regular CT scan (only showed an ovarian cyst at the time, but a new GI noticed the narrowing on it months later and sent me for the CT-A where it was confirmed), MRI, abdominal U/S, chest x-ray, nuclear med test of my gallbladder, gastric emptying test (showed slight slowing), Holter monitor to check my racing heart, lots of blood tests (even one to check for Polycythemia Vera), as well as stool and urine tests. All came back fine (except where noted). I did have IBS in my 20s (I'm 48 now) which got better after I had my children. In recent years, I'd sometimes get terrible stomach pains that I thought came from eating something too greasy. They would last for a few days. I haven't had that since the start of the nausea back in August. I'm not sure if the IBS was a misdiagnosis back then or if those pains are related to MALS? The pain was not immediately after eating and it wasn't regular either.
I just have so many questions. I've been reading this page since I got the diagnosis yesterday. I've seen posts about SIBO and it's got me wondering. I had a hysterectomy 11 months ago and have had multiple laparoscopic surgeries in the past (starting back when I was in my 20s and had the IBS diagnosis). Is SIBO something I have to look into as well?
I live in Roanoke, Virginia. Will the surgeons here have any experience with MALS? Are there any surgeons at DUKE or UVA that do? Our insurance would allow us to go to those two, not sure if they would allow us to go anywhere else. Can you fight insurance to get coverage with a specialist if they don't have one that can do this surgery?
I'm concerned about another big surgery just one year after my hysterectomy. Being so new to all of this, I'm still trying to wade through the pros and cons of the lap vs. open methods. I've read a little about the celiac block. Does this only deal with the pain? Or could it help the nausea?
I'm sorry this is so long. There is just so much to take in now. I'm sure I'll have more questions, but I'll leave it there for now. Thank you!

I had lap. 2 months nausea afterwards. 10lb loss of fluid/edema within a few days of surgery, which was a good thing. 8-10 months intermittent fatigue. Surgical pain front and back (back side of MAL was more painful) on and off for 10-12 months, always exacerbated by sitting. Recovery rate improved dramatically 2 months later when I got an elevating workstation and stopped sitting altogether. Sitting too much will still bring on irritation and some mild MALS Ssymptoms. DON’T SIT! (Sorry about my shouting but it’s very important).
Full recovery of 15-20 symptoms immediately after surgery. Good luck. I wish you well!