Median Arcuate Ligament Syndrome (MALS)

Good news! You had a proper CTA. My celiac artery was the same- it recompressed. The indentation/ angle didn’t have the strength to stay patent. Therefore, I now have a stent. It’s somewhat deformed but functions well enough. No pain!

I forgot to update here, but the CTA did indeed confirm the ultrasound:

"FINDINGS:
CTA: The abdominal aorta is normal in caliber with no evidence of aneurysm or dissection. The superior mesenteric and inferior mesenteric arteries are patent. There appears to be acute angulation of the celiac axis at its origin with narrowing compatible with median arcuate ligament syndrome."

It took the techs at this major Denver hospital 20 minutes to figure out how to make their machine say "breathe out, hold your breath" but I reiterated that we needed inhale & exhale. I looked at the slides myself and it does look like my celiac trunk gets squashed on expiration. At first I felt a sense of calm at least having a clear finding, but now the hard part is coming... trying to figure out what to do. I sent my CD off to Dr. Hsu this morning but there will be a wait of several weeks before I get to talk to him. Also there are very vocal groups on Facebook who are either hate or love the guy, so it's bit overwhelming as a prospective patient. I've also contacted Dr. Skelly and Dr. El-Hayek but both prefer lap surgery and I'm not sure if they'll even give me a consult. All I really want at this point is opinions: how/why did I recompress? Is it the ligament again, or scar tissue, and is there a lasting solution? It looks like my artery still functions when I lift the diaphragm so that suggests I don't need bypass. Also why does my SMA always show high velocities on ultrasound and then is "patent" on CTA? That concerns me.

In the meantime, I think I'm going to go ahead and pursue another celiac plexus block. This morning I woke up in pain again and it's getting exhausting.

Most of the time, the Celiac Plexus blocks don’t last very long. I found the ablation on the Splenic nerve on both sides helped me for 8-9 weeks.

I really appreciate the encouragement. This is what I've got to do, just focus on the little steps ahead.

We are cheering you on- I know what you feel like now.
One step at a time. You will have a CTA to determine blockage or not.
You are addressing your pain by seeing the pain specialist again. When you think about the cause of your pain, the most likely origin is the celiac plexus. The pain specialist should be able to tell what nerves supply the areas that are painful.
Don’t think further ahead now- it will just cause unnecessary anxiety.

On the pain, no answers yet. I was in the process of investigating that but had the ultrasound redone on the same day I visited a pain care specialist. He offered me 2 different nerve blocks to try to see if that addresses the pain. One of them is the same celiac plexus block that I had prior to this last surgery. I'm inclined to get that one done first and see what effect it has this time. My pain is more widespread and in different places but it's possible it's referred pain from the celiac plexus.

That and the CTA seem like what I should focus on. But honestly I'm feeling basically heartbroken and defeated today. I just want to feel like a normal person again, but I'm starting to fear there won't be a way back to that for me.

@jhmontrose - After the initial surgery to cut the ligament symptoms returned after 6 months because the celiac artery returned to its compressed condition. A stent was placed. It still works, but is also kinked.
Regarding your upper body pain- ha anyone told you why? Celiac plexus pain? I think Gabapentin will help you.
The body definitely forms collateral blood flow.
CTA now is definitely appropriate now.
I remember when I first met my surgeon he told me that there are quite a few people that have asymptomatic MALS- found at postmortem. I think collateral blood flow must have spared these people from pain.
If there still is compression, bypass surgery should relieve pain- I don’t know about forever!

I’m in the same situation. I had open mals surgery Jan. 2020 with the ligament cut back to the spine and nerves addressed. I’m thankful that the mals pain is gone but 8 months after, I had a new ct and upper bowel series as I feel like someone has an exercise band around my upper epigastric area and throughout the day it just gets tighter and tighter. In Feb. 2021, I had Radio Frequency Ablation on both sides (one week apart) and it gave me relief for 8 weeks. Last month, I did a trial DRG pain stimulator and it took away 75-80% of the pain, so we know my problem is nerve damage. I’m scheduled on Nov. 4, for a DRG permanent stimulator. I just can’t handle a million tests again. I am 65.

If I remember correctly, you had revascularization done?

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!