A New Diagnosis and Upcoming Surgery

I have recently been diagnosed with a disorder called MALS: Median Arcuate Ligament Syndrome or Celiac Artery Compression Syndrome. (Apparently, they can't decide on a name?) But before I get into that, I'll back up a bit.

I've had stomach problems for a LONG time. When I played sports in high school, I would get sick on the way home from every single road trip. We made all sorts of speculations. I avoided suspicious restaurants and I even quit eating ice for a while, since my dad said that food safety rules for ice machines were frequently broken.

Things got worse my freshman year of college. I canceled dates and spent nights curled up in a ball on my bed (or the backseat of a car. . . wherever I was when it hit) while my friends and roommates were out playing. I was tested for ulcers and other stomach disorders.

I was diagnosed with IBS.

After years of passing out (and a bad fall that involved an ambulance and some stitches) I was referred to take at tilt table test and diagnosed with vasovagal syncope. I was put on a number of different drugs to control the fainting, so then some of the increased stomach problems were attributed to reactions to the different medications. (My favorite was phentermine, which is a form of speed.)

When I was up in Rexburg for a summer, I had an attack so bad that my roommates took me to the emergency room. The doctor X-rayed my GI tract, checked me for gallstones, kept me overnight, and then sent me home. I had another attack later that summer while I was alone in Victor, Idaho that was so bad that I really thought I was going to die.

After Steve and I got married, we were determined to figure out what was wrong and spent a lot of money with a gastroenterologist who x-rayed and ultrasounded everything, but came up with nothing. We gave up and decided it must just be IBS.

I spent quite a few years being pregnant, and stomach problems during that time were attributed to the growing fetuses squashing my innards.

Steve opened this fabulous restaurant called Sonora Grill, and I had a hard time enjoying the food. After talking to a number of people, I self-diagnosed myself with a faulty gallbladder. Even though I had been checked for gallstones three times, I was very confident that my gallbladder was the source of my problems.

I frequently endured attacks that should have landed me in the emergency room, but the timing was never right. (Something about that restaurant and my husband, who spent most of his life there.) So I did what any person would do. We looked at our calendars, scheduled a convenient time to deal with the problem, dropped the kids off at my parents for the weekend, and induced an attack.

The eating part was fun. We went to Sonora Grill and I ate everything I knew I shouldn't: Beef taquitos, tacos al pastor, carne asada, and a banana split. The stomach pain came, so we packed a bag and went to the emergency room. I did not have to pretend or exaggerate anything. I was in so much pain, I was near tears. Unfortunately, a stomach has to be empty to do a proper scan on the gallbladder, so I was given some morphine and sent home for the night. A HIDA scan the next day confirmed that my stoneless gallbladder was not functioning. At all.

I was diagnosed with a dysfunctional gallbladder.

Surgery was performed, and for a little while, I thought my stomach issues were over. But soon the pain was back. . . different, and many of the problems were getting worse. But every time I was finally ready to do something about it, I would start feeling a little better. (Or get distracted with something else in this crazy life we live.)

In November, I had a colonoscopy. While they were at it, they checked me for celiac disease and performed an upper GI endoscopy.

I was diagnosed with "a tortuous redundant tract," adhesions, and biliary diskinesia.

They gave me some medicine and told me to come back when it quit working. I got sick over the holidays and went in to see the doctor again. He sent me to get an abdominal ultrasound and CT scan and referred me to a surgeon to talk about getting rid of the adhesions.

After reviewing the results, the surgeon told me he did not think adhesions were my problem. He wanted me to take a gastric emptying test and there was something "interesting" that had shown up on my CT scan. The radiologist had seen a stenosis in one of the blood vessels coming from my heart. He was pretty sure the image was just a fluke, but said it was worth getting checked out anyway.

I went in for a mesenteric Doppler duplex test one day and back to the hospital for a gastric emptying study the next day. I waited for the results, but didn't hear back from the surgeon who had ordered the tests. (He'd been called away with the Reserves.) I talked to his nurse who looked up my report.

I was diagnosed with a moderately severe case of gastroparesis.

I was prescribed some new medicine and counseled on how to make lifestyle changes that would lessen my symptoms. The surgeon returned after two weeks and finally called to talk to me about the results from the Doppler duplex test.

I was diagnosed with Median Arcuate Ligament Syndrome.

He told me that my "complicated and interesting" case could be corrected by surgery, but it was out of his area of expertise and referred me to a vascular surgeon. I met with Dr. Steppacher for the first time about two weeks ago. I left his office overwhelmed, but relieved to finally have a diagnosis and explanation for my problems. He spent over an hour talking to me and drawing pictures of ligaments, aortas, celiac arteries, and stomach organs on the exam table paper. He told me he probably wasn't going to be able to perform the surgery himself and that I would need to go to the Mayo Clinic to have it done by a specialist there.

I had an angiogram last week. Steve and I met with Dr. Steppacher the next morning to discuss the results. Over ninety-five percent of the blood from my aorta to my stomach is being blocked by the ligament when I exhale, causing my digestive issues. Because the artery has been compromised for so long, the aorta and celiac arteries have been damaged and need to be reconstructed. I am no longer a candidate for laparoscopic surgery (which Dr. Steppacher was not qualified to perform. . . he only has experience with open surgery). Another surgeon from Salt Lake with appropriate expertise to assist was located, and I will now be able to stay here for the operation

Surgery is scheduled for March 3. They will be operating on my aorta, not my heart. First they will cut away the ligament and surrounding tissue that is causing the blood flow problem. Then a graft (tube) will be inserted into the aorta above the damaged area and be connected down to the celiac artery, creating a bypass of the stenosis.

We are very thankful for the skilled surgeon that was able to recognize my problem. (Apparently, it is very rare and not normally looked for.) It is an answer to years and years of earnest prayers. We are hopeful that this will relieve my problems and improve my quality of life. We are also very thankful for the relatively good timing. (Two years ago, we did not have adequate health insurance to cover a procedure like this. And Steve's mom's recent retirement will be a lifesaver.)

I hope these images and my LONG post answer most of your questions.

P.S. Add a follow up visit with the GI doctor who performed the colonoscopy, a five-day study that needs to be completed before surgery to provide more baseline data, another appointment with another GI doc, and I am



J&Jchambers said...

Sheesh.. Emily, I had no idea. I am so glad you found out what is going on and we will keep you in our prayers. And if you ever want to drop your kids off, Oliver would love love love having them around and so would I. Good luck with everything.

MaRea Hess said...

That was a long journey for getting a diagnosis! What a blessing that they found the problem. Who would have thought that your stomach problems are being caused by some issues with an artery. Good luck with the surgery.

Stephanie said...

YAY!!! Good luck with the recovey. Enjoy Sonora Grill:)

Ryanne said...

I'm so glad that after all that you finally have a diagnosis and are looking towards a solution. You must be feeling so relieved! Or will after all you still have to go through. Good luck!

i'm h.mac said...

can i just say that this post perfectly explains why my husband gets nervous when people call him for things from hangnails to hemrhoids.(brain or spine you bet!) every medical professional has a specialty, something they are really good at. just because one has a degree in medicine doesn't mean they are competent in multiple areas. it takes years and years of seeing specialty cases for one to become skilled at finding and seeing things. okay, i am done. i am so glad you have answers! i would love to help with kids and want to bring a meal. i will keep in touch with angie so i can know what's going on. good luck!!!!!

Rachael said...

Wow, Emily! I'm glad that a solution has been found, and really hope that all goes well with the surgery. We will keep you in our prayers!

Mommy Named Meg said...

Wow Emily, and I thought I had more than my share of health stuff to deal with. Glad you finally figured out the problem. You'll be in our prayers as you get this whole thing fixed. Let us know if you need any help with anything while you're healing and before too if you need help. Just let me know.

Molly said...

Sheesh! How did remember all of those medical terms/procedures?
I am so glad that it all seems to be unfolding finally for you.
What hospital will you be at?

Melissa and Mitch said...

Thank Heavens, Im so glad they figured it out. Let me know how i can help in the weeks to come. GOOD LUCK!! I'll be thinking about you.

HeidiAnn said...

...and you take the time to comment on my blog! I am so happy they found an answer, we will be keeping you in our prayers. Keep us updated.

The Conlins said...

Unbelievable! My lenghty history of digestive issues is nothing compared to yours! You'll be in my thoughts and prayers. Keep us posted. Modern medicine is a marvel. Can't wait until you're through all the hurdles and feeling great!

lastott said...

And to think I was crying when I got a kidney stone.... boy I feel like a wimp now! Thank goodness for finding the right doctor and FINALLY getting the proper diagnosis. This will be such a blessing in your life!


Buena suerte with the procedure!

Lori said...

wow. WOW. i'm glad they were able to find out the cause and create a plan of action, but wow. we'll definitely keep you and the surgeon in our prayers.

The Ballard's said...

Very very informative. I am so happy that you finally have an answer. You deserve to get better.

Aneesa Bee said...

Finally! I've been waiting to hear the big scoop :-) I loved all the details, especially the pictures and the CT. Awesome. Your condition, NOT awesome. We will keep you in our prayers. Incidentally, March 3 is Maggie's birthday and so I'm convinced that is a good day.

Mrs B said...

Oh, Emily. Bless your little heart. (Aorta & other guts included.) I'm so glad you got some answers & are on your way to help! Crohn's totally pales in comparison, but hey- let's do lunch & chat gut problems any time! Curled up while your roomates were out playing?? Totally been there. Let me know what I can do to help!! Seriously. & then lunch when you're recovered.

Jessa said...

It's been a while since I've checked your blog!!! This is BIG news!!!!:) I am so happy they figured things out...finally! Where are you getting your surgery at?! You will definitely be in our prayers!