In this first installment of a series of interviews with Beverly Hills-based, world-renowned surgeon Dr. Danny Shouhed, we discuss Median Arcuate Ligament Syndrome (MALS), its symptoms, treatments, history, and the inspiration behind his groundbreaking work with people suffering from it.
MALS, also known as celiac artery compression syndrome, is a rare disorder characterized by the compression of the celiac artery and surrounding nerves by the median arcuate ligament, a fibrous band of tissue in the abdomen. This compression can lead to chronic debilitating abdominal pain, weight loss, and digestive issues.
Read on to learn more about Dr. Danny’s history with the disease, his thoughts on the cause, and how to get relief.
A Look at Dr. Danny Shouhed’s Approach, Philosophy, and Specialized Surgery for MALS
Dr. Danny, how long has MALS been around, and how long have you been treating patients for it?
MALS has been an established diagnosis since 1917 when Dr. Lipshutz first identified it in cadavers. By the 1950s and 1960s, Dr. Harjola and Dr. Dunbar recognized that this was a disease process that could be treated with surgery. This operation has typically been performed by vascular surgeons which involves a big open incision. Vascular surgeons are artery doctors, so the primary focus of MALS historically has been on the celiac artery. This theory, however, has led to confusion on the existence of this disease because even if you ligate the celiac artery, which is just to completely cut it off, 95% of the time, patients will not experience any pain or other GI issues. How could it be that compression of this artery is what's causing these other patients pain? It didn’t make sense.
MALS, which was first called Dunbar Syndrome, is a very rare, complex disease process. The majority of patients, if not all, have other gastrointestinal and systemic conditions. About 20 years ago, a minimally invasive approach to MALS became available. Still, there was a lot of controversy on whether or not MALS even existed. That’s why I became interested in it, yet even when I first started doing it over 10 years ago, I, too, was skeptical. Some patients got better, and some didn't. Was this really a disease, or was I just performing a placebo operation?
Over the years, I began to think about whether MALS is more of a neurogenic disease process rather than a vascular one — perhaps it's a pinched nerve more than it is a pinched artery.
Patients have also become smarter about it. The majority understand that perhaps it's not just a vascular issue. It is a neuropathy as well. Patients are looking for surgeons who address the nerve as well as the artery. They’re diagnosing the disease process themselves, advocating for themselves, and realizing that you can do this operation safely and effectively without making a big incision.
Was there a particular success story that made the light bulb turn on and inspired you to focus on MALS surgery?
The second patient I ever operated on — I vividly remember this — she had lost 50 pounds when she came to me. Everyone kept saying to her, “You just have to eat.”
I had a one-on-one private conversation with her, and she said, “I think I have an eating disorder. Can you refer me to an eating disorder clinic so I can eat and feel normal again? I feel like I’m going crazy.”
However, based on her symptoms and imaging studies, I told her, “I don’t think you are crazy. It looks like you have MALS, and we should try the surgery —I think you're going to get better.” We performed the operation safely, and she slowly began to improve. Despite attempts to continue follow-up, we did not see her after the first month.
Then, close to one year later, I got a letter.
She wrote me a handwritten letter, front and back. Her symptoms were gone. For the first time in over a decade, she was living a normal life again. Her letter changed the trajectory of my professional career. I have since performed over 100 surgeries for MALS. The majority of these patients have gone from living a life characterized by pain, depression, and despair to eating again, enjoying time with their family and friends, and getting back to what normal people do every day. I tell people every day how fortunate I am to be able to do the work that I do with these patients. It has been the most gratifying part of my professional career.
That's also when I confirmed for myself that this disease exists. This is real. These poor patients are being driven crazy or are being convinced that they're crazy because they are misunderstood or, even worse, dismissed. Nonetheless, the medical community overall still believes MALS is a myth and labels these patients as crazy.
All these patients have other associated conditions, such as POTS (Postural Orthostatic Tachycardia Syndrome), MCAS (Mast Cell Activation Syndrome), EDS (Ehlers Danlos Syndrome); or other vascular conditions, such as Nutcracker syndrome and May Thurner Syndrome or more commonly, other GI conditions. In fact, every single MALS patient I have ever treated has at least one other type of GI disorder, whether it be IBS, Gastroparesis, SMA syndrome, gallbladder disease, or GERD (reflux disease). So when they go to a vascular surgeon who knows nothing about the GI system or, say, an average robotic general surgeon who doesn’t know about associated conditions, they say, “I can cut the ligament for you.” They don't understand that they’re promising the patient only a partial solution to the overall problem.
As one of the first foregut surgeons to really focus on treating MALS and being a board member of the MALS Foundation, do you have a theory on how or where MALS originates from?
Nobody knows for sure. I don't want to say that there isn’t a vascular component to this — there probably is, and it’s probably a combination of both the artery and the nerve. Maybe one day we'll know exactly what causes it. What we do know is that a lot of these patients have empaths, so they're pro-inflammatory. Many have a supermodel look; tall, lanky, skinny — maybe that contributes to their anatomy. A lot of them develop it in their teens or 20s. I don't know if, during puberty or a growth spurt, that maybe the way they grow somehow causes that compression.
We do know that it's this ligament that's too tight, but why does that happen? One theory is that a third of these patients have connective tissue disorders like Ehlers-Danlos Syndrome and that there’s a connection there. These patients have really loose connective tissue, hypermobile or super stretchy skin, or very flexible joints. If your tissues are droopy or loose, your diaphragm probably sits a little bit lower. That ligament also sits lower than it usually would, which can compress the artery and the nerve.
Most disease processes involve a combination of genetic and environmental factors so I do believe there is a genetic component as well as environmental factors that contribute to it.
What type of pain does MALS cause in patients that you’re seeing?
MALS is epigastric pain; it's a squeezing pain; sometimes, it's a sharp pain. The pain usually radiates to the left. Now, very specific to MALS is anything and everything that they eat or drink makes the pain worse. That's a very unique quality of MALS, which I think very few surgeons look at. It’s the location and the quality of the pain. It’s not something that you get once in a while. You’re getting this pain every day. The pain is so bad that you develop a fear of eating and drinking, so you’re losing weight unintentionally.
If someone is on the other side of the country, or the other side of the world for that matter, why would they fly out to see you for MALS surgery over a local general surgeon?
Being a physician, the worst thing I can do is operate on somebody and then cause a complication, especially if they didn’t need the surgery at all. The second worst is to operate on somebody, and it doesn’t make them any better. So I try to qualify our patients before they come through the door. If the symptoms align, the imaging studies are positive, and the nerve block provides temporary relief, I can make you better.
I want patients who are suffering from MALS to feel like, “Yes, it is worth it for me to fly out to have Dr. Shouhed operate on me.”
Why? First, it’s a question of technical ability. There are surgeons out there who can actually perform this robotic surgery and divide the ligament. However, the technical aspect is addressing the nerves, but unfortunately, many physicians still don't believe in it or know how important that is.
Secondly, in the last two months, I've been called to offer my expert medical insight by three different attorneys for medical cases because three patients had died on the operating table during this procedure. You're operating on top of five major arteries. Do you really want to undergo this operation by somebody who's done this once or maybe twice in their career? Which, by the way, is the vast majority,
Thirdly, there are so many other GI issues that are happening in MALS patients, and I can address them all. I can operate and treat gastroparesis, reflux disease, and SMA syndrome, which a lot of surgeons can't do — vascular surgeons can't do any of it, and they don't even know what to make of it. In fact, there are patients for whom I have performed all these operations simultaneously and safely.
Most importantly, long-term follow-up is critical. I want to know how you're doing three months later, a year later, five years later — our follow-up is very extensive. You get my cell phone because I want to know if you're doing well or if you're not doing well; I don't just do the surgery. I talk to your internist and your primary care physicians and tell them what needs to be done post-op. I will help you fix all of your issues to the best of my ability.
How to Get Relief from MALS Symptoms
As Dr. Danny discussed, suffering from MALS symptoms can be debilitating, and you may feel like you can’t figure out what’s going on or where to turn for help. But there’s hope. Dr. Danny Shouhed and his expert team are MALS specialists who deeply care about helping patients finally get freedom from this often misunderstood, misdiagnosed, and mistreated condition.
We lead the way in these complex abdominal surgeries with advanced technology and precision. As a surgeon for MALS, Dr. Danny minimizes the risks and invasiveness involved so you can become pain-free and back to your normal self quickly.
Ready to talk with Dr. Danny Shouhed about how he can offer a minimally invasive, robotic-assisted surgery that alleviates MALS?
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