Median Arcuate Ligament Syndrome (MALS)

In 2006 I had middle epigastric pain, which radiated to my left side under ribs. I went thru years of testing. Pain meds even went to Cleveland clinic. No one had a answer. Finically after years 2016 I was sent to a vascular doctor, he ran MRI. Found I had a rare disease called ciliac artery compression syndrome/ Dunbar disease. I had lost to 89 pounds. The only cure is surgery and I am not a candidate. Today the pain is worse. And gets worse after eating. It keeps me up all night. I’m weak. I do not like pain meds. I’m on a low dose. And it makes me sick. This causes my blood pressure to raise really high , I get tightness in my left neck and jaw. Pain in my left chest area. But there is nothing they can do. But want to throw pain meds at me, which makes me mad.

Hi @dwoody59 and welcome to Mayo Clinic Connect. Celiac artery compression syndrome/ Dunbar disease is also known as MALS so you will see that I moved your post to a very long standing discussion with many members engaged in conversation about the very same condition. There is a lot of support surrounds this condition.
Median arcuate ligament syndrome: https://rarediseases.info.nih.gov/diseases/12308/median-arcuate-ligament-syndrome

Have you found any locally at all?

@dwoody59 I'm joining Amanda in welcoming you to Mayo Clinic Connect - MALS group. I found this amazing site when looking for information on the rare MALS condition.
I'm so sorry for what you are going through - I have been there. Amanda posted a couple of very good links.
Can you tell me why you are not a candidate for surgery?

Who is your surgeon?

Who was your surgeon?

Dr. Adams at MUSC in Charleston.
Also vascular surgeon, Dr. Adams( not related).
I must admit I wasn’t aware of the importance of having the right surgeon. I have only had important procedures at university hospitals and Mayo.
At my initial consultation I was told the odds of success- 50/50. I knew I couldn’t live the way I was so decision was made.

Well folks, I got some really bad news today from a follow up ultrasound (which I insisted upon despite dismissive attitude of Dr. Modanlou). My celiac trunk and SMA are both still showing significant stenosis, actually worse than before:

"The superior mesenteric artery has a proximal velocity of 258 cm/s
with normal arterial waveforms although in expiration this increases
to 408 cm/s. The celiac axis has a peak velocity of 176 cm/s in
inspiration increasing to 528 cm/s with a high end diastolic velocity
of 201 cm/s with expiration, which is consistent with stenosis."

The good news I guess is that I'm a functional, living human being who can eat normally. But I've been on protonix since May for gastritis and I have a whole ritual of stretching and icing every night to get comfortable enough to sleep. I'm now taking trazodone, gabapentin, and trying nortriptyline for pain, which is why I decided to push for another test.

I really don't know what to do now. This was my 2nd surgery and the recovery was so difficult. I had hoped maybe the numbers would be improved enough that at worst, I could consider stenting or angioplasty. Now I guess I need another surgery if I want good blood flow restored, but will that even work if we don't understand why it keeps coming back? There is a good surgeon in Salt Lake I probably should have gone to, and of course Dr. Hsu who will be out of network and cost me a fortune. I'd appreciate any suggestions anyone has.

@jhmontrose - I’m so sorry to hear this!
Do you have symptoms?
If not, having vascular surgery because of the numbers may be too risky.

I'm overall worse than I was before the 2nd surgery. I don't have the deep sharp pain anymore, but I have other pains in my chest, ribs, and back that varies from day to day. I'm unable to do even light theraband exercises because it makes me hurt worse, to the point that I started to need half an oxycodone at bedtime. So I have no muscle tone in my upper body. I can only sleep on my back, because if I roll onto my sides I wake up hurting in the middle of the night. I can hike (which is one of my passions) but I start to hurt when my heart rate is high. Every night I have a routine of supplements, stretches, icing, and CBD lotion to get pain under control so I can sleep. I've recently started taking nortriptyline in addition to trazodone and gabapentin. It does help some. I'm on a leave of absence from work because of all this.

As for my stomach, it was 100% perfect for about a month after surgery, then I started to get "morning sickness" again that would wake me up with nausea and feeling like I needed to throw up. I was diagnosed with gastritis and put on a PPI which I'm still on. If I stick to a very careful, easy to digest diet it does okay but I still have some bad mornings, especially if I accidentally roll over on to my side while sleeping.

I've already called a pain care specialist I had just visited, because he offered me another celiac plexus block. That seems like an important step, to see if it relieves some or all of the new pain I have. I'm really concerned about how high the arterial velocities are, especially since both celiac trunk and SMA are involved. Where am I getting collateral blood supply then? I also think I need another CTA done (with proper breathing protocol this time) to see if there's still external compression involved here. I would favor bypass surgery if it has a better chance of eliminating this problem forever.

Thanks for replying!

If I remember correctly, you had revascularization done?