Median Arcuate Ligament Syndrome (MALS)

Jayson, I can relate. When I had my initial diagnosis in 2015 I saw so many GI docs and most of them were so incredibly dismissive. My first one seemed to have only one answer: take more prilosec, take protonix, double up on protonix. So I finally said to him "is that your only answer, take more acid suppressants?" and he got visibly angry at me and said "do you want to get well?" So condescending. Then I had an ER doc accuse me of just being a drug seeker and sending me home after zero tests. After doing every GI test imaginable I finally saw an RN at an urgent care office who looked at my history and offered to make some calls for me on her lunch break. She set me up with a young GI specialist who ordered a HIDA scan (all clear) and the mesenteric artery ultrasound that finally diagnosed me. If it wasn't for those two, I have no idea how much longer it would have gone on.

Unfortunately, like you, I am having a recurrence of symptoms after 5 years. Last night was the worst night I've had since 2015, sharp pain building up, had to take an oxycodone and sleep propped up, then I still woke up nauseous. That has been my worst symptom and thankfully this time around, I am not having too much trouble eating. Once I get up and move around the nausea fades but pain persists. I'm getting a nerve block done next week and hoping the pain care center will also offer me some help over the next few weeks while I wait for what I expect to be a second surgery.

As far as seeing a new surgeon, I would at least google search and see what other patients have reported. The one I've been consulting is very young but has a special interest in MALS. Another surgery is scary to think about but so is living with constant bouts of pain/nausea.

Jayson, I can relate. When I had my initial diagnosis in 2015 I saw so many GI docs and most of them were so incredibly dismissive. My first one seemed to have only one answer: take more prilosec, take protonix, double up on protonix. So I finally said to him "is that your only answer, take more acid suppressants?" and he got visibly angry at me and said "do you want to get well?" So condescending. Then I had an ER doc accuse me of just being a drug seeker and sending me home after zero tests. After doing every GI test imaginable I finally saw an RN at an urgent care office who looked at my history and offered to make some calls for me on her lunch break. She set me up with a young GI specialist who ordered a HIDA scan (all clear) and the mesenteric artery ultrasound that finally diagnosed me. If it wasn't for those two, I have no idea how much longer it would have gone on.

Unfortunately, like you, I am having a recurrence of symptoms after 5 years. Last night was the worst night I've had since 2015, sharp pain building up, had to take an oxycodone and sleep propped up, then I still woke up nauseous. That has been my worst symptom and thankfully this time around, I am not having too much trouble eating. Once I get up and move around the nausea fades but pain persists. I'm getting a nerve block done next week and hoping the pain care center will also offer me some help over the next few weeks while I wait for what I expect to be a second surgery.

As far as seeing a new surgeon, I would at least google search and see what other patients have reported. The one I've been consulting is very young but has a special interest in MALS. Another surgery is scary to think about but so is living with constant bouts of pain/nausea.

Hi @chicken

Again, I have to agree with @lasirvent, Lactulose is a great way to increase intestinal motility. I was given it many years ago after a laparotomy which basically caused my intestines to shut down completely. It took a while to get going again but the Lactulose worked.

I stopped using Lactulose in favour of a more natural remedy, so I started eating liquorice daily. I didn't eat too much and it is important to let you know that eating a lot of liquorice daily can reduce your potassium levels which in turn can cause high blood pressure. It is always best to discuss with your primary practitioner as a lot of liquorice can interact with certain meds like warfarin.

However, the benefits of eating liquorice for digestive problems and other conditions can be great, it is thought to have antimicrobial, anti-inflammatory and antiviral properties too. Just make sure that if you buy liquorice sweets, they actually contain liquorice plant extract, as many sweet sold as liquorice don't have any liquorice in them at all. You can get deglycyrrhizinated liquorice as over the counter supplements, this stops the possibility of those side effects as the cause, (glycyrrhizic acid) is extracted. But I'm a liquorice sweet fan and enjoy the yummy taste of the sweets! Look up the benefits of deglycyrrhizinated liquorice if you are wanting an over the counter remedy.

Mark

Jayson, I can relate. When I had my initial diagnosis in 2015 I saw so many GI docs and most of them were so incredibly dismissive. My first one seemed to have only one answer: take more prilosec, take protonix, double up on protonix. So I finally said to him "is that your only answer, take more acid suppressants?" and he got visibly angry at me and said "do you want to get well?" So condescending. Then I had an ER doc accuse me of just being a drug seeker and sending me home after zero tests. After doing every GI test imaginable I finally saw an RN at an urgent care office who looked at my history and offered to make some calls for me on her lunch break. She set me up with a young GI specialist who ordered a HIDA scan (all clear) and the mesenteric artery ultrasound that finally diagnosed me. If it wasn't for those two, I have no idea how much longer it would have gone on.

Unfortunately, like you, I am having a recurrence of symptoms after 5 years. Last night was the worst night I've had since 2015, sharp pain building up, had to take an oxycodone and sleep propped up, then I still woke up nauseous. That has been my worst symptom and thankfully this time around, I am not having too much trouble eating. Once I get up and move around the nausea fades but pain persists. I'm getting a nerve block done next week and hoping the pain care center will also offer me some help over the next few weeks while I wait for what I expect to be a second surgery.

As far as seeing a new surgeon, I would at least google search and see what other patients have reported. The one I've been consulting is very young but has a special interest in MALS. Another surgery is scary to think about but so is living with constant bouts of pain/nausea.

The original surgeon I feel was very good. He took the time to listen to me and was very understanding. He was the only one who believed me unlike others I dealt with. My first vascular surgeon laughed at me and said that your celiac artery wasn't the problem. That it was all just in my head. It wasn't until Dr. Lowery sent me out for another Doppler US. My velocities were from 580 to 620. After that, the original vascular surgeon sent a certified letter stating my health was in danger and I needed to see him ASAP. LOL! So I'm very reluctant to see this new vascular surgeon her name is Jenny Cho. She's out of KU MED CENTER IN KS. So I have an appointment on April 8th and we will see what she wants to do. I feel she will just blow me off as the other did. It sad people go to their doctors and they just look at you as nothing is wrong. It's their arrogance that comes through when they don't know about MALS. However, I believe I found a good general surgeon who listens and is willing to do what is right for me.

@jayson - It is very upsetting to get the symptoms back. I did after 6 months. They did another angio CT and saw that the artery had not opened up after the pressure from the ligament was removed.
The plan was to try placing a stent- I was warned that if that failed they would have to open up and repair artery.
Do you have confidence in your surgeon?

@jhmontrose - I had the surgery January 2015. All well until 6 months later when symptoms recurred. CT angio showed the celiac artery still had not returned to normal shape after the ligament was removed- it had compressed the artery. A vascular surgeon placed a stent that has worked so far. The next step would be open surgery to repair the artery. They removed the nerve bundles in the first surgery.
I had been told at the first surgery it was a 50-50 chance it would work. There are many patients that require more surgery. This is not a condition that is promised to go away, unfortunately.
The CT angio that you had done locally probably was not done the way the specialists require.

Hi!
Has anyone experienced decreased motility after Mals surgery?
I had my surgery almost two years ago and it was Thank G-D very successful, I no longer have that pain after eating and all the other symptoms.

I am still really struggling with motility thought and it surprisingly got worse after my surgery. Has anyone experienced this? If so what do you do about it?
I’ve been on just about every medication for it and the only thing that has worked is Linzess in a very high dosage, but is now stopping to work. My doctor is recommending that I now try Motegrity, have any of you taken this? What is your experience with it?
Thank you in advance

Hi, I am getting ready to have the CT scan this week for MALS. I already had the ultrasound and my cardiologist who treats me for Dysautonomia says I do have MALS. Is the surgery really as scary as it sounds?

I have been stressing about it but really cannot live with the pain and nausea I have. I have a bunch of other syndromes with one being Fibromyalgia. The MALS symptoms seem to be triggering my other pain from Fibromyalgia. I just need relief and now I feel that I cannot eat or workout. I am glad I found this group for support.

Tonya