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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?
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Hi Kari.
I'm so grateful for your presence and caring in our little MALS community.
I have a big question.
I had the open MALS surgery and celiac nerves cut in July of 2017. However, I still have great pain, cramping and exhaustion after eating small meals. I'm struggling to keep my weight up at 119 pounds. I'm 6 foot, one.
My Question is: has anyone had the celiac plexus block after the MALS surgery? And did it help with the pain and bloating and allow you to increase your food intake?
One more question.
Is anyone on pain meds? If so are they effective?
I'm taking Lyrica, 50 milligram capsules, one, 3 x's a day. Lyrica is for diabetic nerve pain. Currently I'm cutting down my dose and then bringing it back up so it can retain it's strength at the original dosage. The Lyrica is not a total fix, but it has helped
Any comments will of course be greatly appreciated.
Lou D'Amico
He only does Open surgery and he explained why in detail. He's one of the few doctors that actually sat down and talked to me like a person. He detailed what would be resolved, why he does things the way he does and what wouldn't probably remain (my throat issue).
Also, his second in command (for lack of a better term) has been there for me to answer all the complex questions you never think about on the spot. They stated that I'll be in the hospital for 5-6 days and will require at least a month of recovery time before going back to work. I don't know how I'll be able to research who the nurse staff will be other than here-say.
Managing my pain is easy as long as I don't do ANYTHING physical involving use of my core. No bending over, no motion that involves stretching, twisting or compressing my abdomen. No strenuous activity involving back muscles or core muscles. The big issue is that I'll start feeling normal/happy/motivated after a week or so and then start trying to get stuff done around the house and within hours I'll be sufficating in a big black hole of anxiety, nausea, dredd, pain, and bowel disfunction (if I really over do it) for multiple days. On the worst days I've seriously considered suicide as an acceptable alternative to the experience. I'm just glad there are good days to remind me that I will be able to recover from that hell. Maybe I don't pay much attention to the pain because I've experienced way worse.
As for the nerve block... I didn't find out until the day before the procedure that it was only a 24 hour block and I ended up having my left side go numb (now on my second week of that). They also ended up nicking my diaphragm; but, that healed up before I left the hospital.
Oh no! I have heard Dr. Hsu’s name But do not know much about him. Does he do laporscopic or open surgery if you don’t mind me asking? I had both my surgeries done at Mayo, by Dr. Gustavo Oderich, I am very happy with him and his nurse Jan. I was in the ICU for several days following my surgery and then went to the vascular floor and I have to say, I am very impressed with the vascular nurses! They were amazing! If you have open surgery having nurses that are trained in vascular patients was incredible. They were able to anticipate my needs before I did. If you have any questions about surgery, recovery time, what to expect please don’t hesitate to ask. I would be more than happy to share my experience, and I have been fortunate to have worked with several other MALS pts. This is not a fun diagnosis and for many of us is becomes a chronic condition, the surgery helps and for some it is a cure, for others the pain and symptoms does come back. But I have never met anyone yet, even those with severe complications say they regret having the surgery. How are you controlling the pain now, is the block still working? Usually it is very temporary.
No, and Dr. Hsu's scheduler won't call me back.
@dave06351 How does MALS just happen out of the blue is a GREAT question! It is my opinion that we have born with MALS, but symptoms can come and go, first being mild and over the years becoming progressively worse. Arteries are very flexible but over the years of being kinked they do not go back to the nice garden hose opening. I believe that when experience vasospasms within the arteries that causes angina or pain. MALS is a bit different for everyone and we need more research on this syndrome. I also believe as time goes on we will find out it is more than a anatomy problem, but we just do not have enough evidence of that. Would love to have some epidemiology studies done to see the overlaps in other connective tissue, autonomic and vascular diseases. Have you had surgery yet for your MALS??
@dave06351 @katy1921 I agree with what Dave wrote above. MALS is caused by a ligament causing stenosis, however other vascular issues maybe present for your Mom that have the same symptoms as MALS. It sounds like she has had an extensive work up, but I do not see that anyone has addressed any vascular issues as a possible cause of her problems. Has she seen a vascular doctor at all? I would be curious to know if she had elevated velocities of any of her abdominal arteries on doppler ultrasound. This is a non-invasive test that could give the doctors a better picture of what is happening. Several vascular problems lead to abdominal/intestinal angina angina. It maybe coincidence that her symptoms appeared at the same time of her surgery, however it is something that needs to be noted. Further work up is needed, as a celiac block is helpful for the pain but it does not tell you the cause. Do you have a vascular doctor in your area?
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1 ReactionMALS can occur when two simultaneous conditions are prevalent. Aggravation of the Celiac Ganglion & the Median Accurate Ligament being in a location that can cause it to collapse the celiac artery or chafe it. It's possible that the surgery did aggravate the Celiac Ganglion; but, should not be a continuous problem.
Obviously, you need to keep on the surgeon that did the work and have him straigthen up since it happened under his hand.
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1 ReactionThe Plexus Block is used as a Diagnostic for MALS confirmation. My MALS symptoms resolved when the block was used. My symptoms were ripping lower rib pain, throat obstruction sensations and nausea/pain in the upper abdomen. They all went away from my block. Unfortunately, it was only a diagnostic and only lasted me about 24 hours.
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1 ReactionHi @dave06351 - thank you for sharing. I just posted below for my mom and noticed you recently had celiac plexus block. Did you have any complications from the procedure that lead to the diagnosis of MALS? Thank you in advance
Hi Everyone- @kariulrich My mother has been battling chronic abdominal pain for almost 4 years now. Long story short, she felt a weird pain once in her abdomen and mentioned it to her gyno and it led to finding pre-cancerous nodules in her pancreas. She has pancreatic surgery to remove part of her pancreas and her entire splein as a precaution. It was deemed she did not have pancreatic cancer and still does not today. Since then, she has been battling awful pain when she eats, immense weight loss, etc. A year ago she had her gallbladder removed as they thought it would solve it, and it did not. This week, she had celiac plexis block surgery to tackle the pain (again, another surgery designed for pancreatic cancer patients, but without her actually having the cancer). She is much worse since the surgery and no one can seem to figure out why. I came across MALS in my online research, but could not find the answer to this question - can MALS occur as a result of something going wrong during pancreatic surgery?
My mom did not have any issues eating, beyond a regular occasional bad stomach as you would expect with age. The doctor seems to think he messed something up this week in surgery and now I am wondering if she might have this as a result of something occurring in her original surgery a few years ago. Any insight would be much appreciated.
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