Median Arcuate Ligament Syndrome (MALS)

@jmmb It is good to hear from you! I am interested in hearing how the diet works for you. I do not know much about it, but I found this patient blog: http://www.ibsdiets.org/fodmap-diet/fodmap-food-list/ have you seen this before? It looks like a very complicated diet, but well worth it if it helps. I know having test after test stinks, but it gives you a bigger picture of what is happening. I have been through some testing for pelvic floor problems, as well as physical therapy... lol yes... physical therapy... you can imagine what that entails. Visceral hypersensitivity is interesting and I am learning more and more about it. One thing new for me this week was starting on a calcium channel blocker, I have been on it for 3 days and so far it has helped. It opens up your arteries to improve blood flow. I am tapering down on my tramadol. Have you seen this article? https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2778114/ Although it is a bit dated I found it very helpful at understanding abdominal vascular problems, you may want to take a look.

@kariulrich ,Well I went to the nutritionist and she put me on the low FODMAP diet. I haven't started yet but we will see. I tried to do this once before but didn't really follow through, to complicated. I am going to do it for real this time to see. I did my ct angio and tomorrow I go to vascular surgeon so will see what happens. GI dr. wants me to go for anorectal manometry and proctogram tests. She thinks possibly pelvic floor dyssynergia. I don't know, I am so tired of all the tests and these don't sound fun. Have you had either? She does believe I have some visceral hypersensitivity, but that doesn't explain the bloating. That is where the fodmap diet comes in. I am going to ask the vascular surgeon about the celiac block as well tomorrow.....

I have heard a little about visceral Hypersensitivity. I read about it with sibo actually. The gi dr at mayo had me go to psychologist to do the timed breathing. I get how it can help in some areas, but not sure if that addresses the bloating and all feast or famine bowel movements. Seems more for pain, but I guess they are saying the nerves are making me feel this way. The bloating is visual though as well. It is all so complicated. I assume this is the same thing as something I saw on Mayo website called Central Sensitization. There was a short video clip. It's interesting. I am not sure where or how I found it though....
Well I will see what she has to say tomorrow, then onto vascular next......
Again thanks for all your info...I will keep you posted.

PS. interesting about the lactose test, however that cannot possibly explain everything. It is a piece of the puzzle, which I hope the doctor recognizes. Let me know how things go! I am anxious to hear what they have say. 🙂 Hugs!

@jmmb I am with you 100 percent that these issues are related! I was just reviewing my new GI doctors notes, he has a special interest in vascular GI problems. One of his differential diagnosis for me is visceral hypersensitivity syndrome, which I had not heard of, but makes sense. I will try and copy and paste an explanation here:
Visceral Hypersensitivity: A Major Source of Abdominal Pain
Christina Lasich, MD , Health Professional
If you have ever been sunburned, then you have experienced hypersensitivity. Your skin was very sensitive to light touch, warm water and clothing for days. Well, imagine if that sensitivity was being experienced in your gut. Some people are troubled by such a problem called visceral hypersensitivity.

The phenomenon of hypersensitivity involves the nervous system. At some point, the irritation to a particular organ system like the skin or the gut leads to the sensitization of the nervous system, the alarm system. In severe cases, the central nervous system becomes so hypersensitive that everything seems to hurt. Painful stimuli become even more painful; that sensitivity is called hyperalgesia. Even non-painful stimuli like touch become painful; this sensitivity is called allodynia. In the case of visceral hypersensitivity, everything from digestion to urination can become painful. Thus, many conditions are linked to visceral hypersensitivity like: noncardiac chest pain, nonulcer stomach pain, irritable bowel syndrome, and severe menstrual cramps.1 All of these conditions are really just a form of visceral hypersensitivity. And many people are affected by one form of it or another.

For one reason or another, irritation to the internal organs early in life2 or chronic irritation for many years can lead to visceral hyperalgesia. This matter is not just about physical insults or inflammation. This matter can also be caused by anxiety and stress. But all roads eventually lead to the central nervous system, the brain.

Women seem to be the most commonly affected group of people. But the diagnosis of visceral hypersensitivity can be difficult because gut pain can be so vague, so hard to pinpoint and so widespread. The biggest hallmark of visceral hypersensitivity to watch out for is pain provoked with normally non-painful stimuli. Some people might experience pain right after ingesting food or water or while the bolus of food or water moves through the intestinal tract. Others have pain when the bladder is full or when it is time to have a bowel movement. Pain during normally non-painful body functions is a clue that the abdominal organs might be hypersensitive.

Once the diagnosis of visceral hypersensitivity is made, the treatment can be tricky. At first, medications used to prevent overstimulation can be used like proton pump inhibitors that reduce stomach acid production or spasmolytics that reduce gut motility. A secondary approach might introduce medications used to treat nerve pain like the anti-convulsants (that can calm the nervous system) or the tricyclic analgesics (that can also reduce nervous system sensitivity). Of course, there is an option to use opioids, but that can also lead to long term consequences like opioid-induced hyperalgesia and more pain. Alternatives to medications are also worth mentioning for the treatment of visceral hypersensitivity, especially those that provoke a relaxation response like meditation, hypnosis or visualization. Like most forms of nervous system sensitization that cause pain, a multi-dimensional approach is more likely to work than a singular approach to this very difficult problem.

For many people who experience this type of abdominal pain, it is difficult to switch the focus away from the gut and to the brain. But for centuries, people have long understood that there is a very strong connection between the gut and the brain. Visceral hypersensitivity entangles both the internal organs and the central nervous system in a nasty web of chronic pain. In order to untangle that web, the source of pain needs to be treated all the way to the brain.

Gut. 2006 July; 55(7): 905-908.
Journal of Pediatric Gastroenterology & Nutrition: October 2005 - Volume 41 - Issue 4 - p 554
https://www.healthcentral.com/article/visceral-hypersensitivity-a-major-source-of-abdominal-pain

Well I am not crazy!!! (not that I wish this on anyone...)I can't figure this out. It totally sucks......I just did breath test for lactose, and it was positive. I knew this already for years. I'm afraid tomorrow at the GI follow up she is going to say that is where my symptoms come from, but NO, I didn't have these symptoms before surgery. Yes if I ate ice cream I would have an issue, but this is different. I'm sure it doesn't help, but this is not why. If I go tomorrow and she says its the lactose intolerance and irritable bowl I am going to loose my mind!!!! I will be back where I was 3 years ago with no answers. Sibo made sense, and with 3 positive tests I was hoping to get relief here. I know the MALS is related and will be lifetime. It is all related......I don't know why some doctors can't see that. Thanks for the fiber into. I use Miralax but not regularly because it depends on if its feast or famine time.....I will try yours.

Here is the fiber I use: https://www.amazon.com/dp/B00DKN8E0M

@jmmb YES YES YES!!!!! I have the same problem, my MALS surgery helped with the pain but never the GI/bowel issues. Today is one of those days where I cannot leave the house... it is so severe. It takes up all my energy and I am left feeling so fatigued. The malabsorption issues have never improved for me. The one thing that has helped, but not cured these symptoms is gummy bear type fiber! I am with you about this being a huge problem.

@kariulrich and anyone else I have another question. My MALS and "sibo" overlap. I am wondering if anyone else diagnosed MALS, has issues with the constipation for days, then frequency of bowel movement several times a day. A feast or famine as I call it. I definitely have the pain and bloating after eating, so that can be either. Curious about the bowels because this is a huge problem for me besides the pain.
Thanks....

Please think about reading one of the book by Dr Amit Sood. His meditation program with "paced breathing" grounded me after lung cancer diagnosis as a never smoker and helped my quality of life. When I learned how to relax my nervous system after lung and tumor resection...my life and outlook changed. "Stress Free Living" & Happiness book titles are my favorite by Dr Amit Sood. Also, try to hear him speak! Life changing patty way was given to me.
linda