Median Arcuate Ligament Syndrome (MALS)

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!

@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.

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.

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.