@elle1233

Hi Ingegerd, I'm getting a little tangental here, but thank you for your reply to an earlier post. I had never heard of MALS before and have been reading about it. It does fit the pattern of what I experience to some degree – eating and activity, particularly bending over type things, exacerbate my pain. Not immediate, i.e. when I am doing it, but later on. I've always found this interesting but never found anything else ever talking about a relationship.

One thing I don't have however is vomiting. I have nausea, but don't vomit. It seems that vomiting is listed as a classic symptom with MALS (as well as mesenteric ischemia). This leads me to think (and I know my Dr. will think 🙂 ) that this couldn't be my problem. Did you have vomiting?

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Hi Elle! I had only nausea, no vomiting! Just running out for an errand and I want to be able to give you a better response, so hold that thought? Basically not everyone vomits.

I will hold it, but thanks for the quick reply!
I was curious, because one think I've encountered on my GI journey, is that there are often lists of 'classic symptoms", that docs learn for specific disorders, and if you don't fit the complete profile, you are ruled out. The GI doc I have is very much of that variety, although he is a fellow (in training) and I think he is going by what he has been taught. He says you can't have this or that because you don't have diarrhea, or whatever symptom you are "supposed" to have. Yet, I'm finding, that not everyone follows a typical pattern, so I think they have to be willing to think outside the box sometimes. It feels like I have a "block" there , although obviously no obstruction or anything that shows up on a scan. I have bile backing up into my stomach, and some damage to cells there, SIBO, and "markedly slow" small intestine transit. Logically, this all seems to correlate with what I am experiencing.. almost like there is a "block", there is a log jam, but it's not my bowels, it's at the small intestine.. everything is backed up there, causing the bacteria to multiply and bile to reflux. It logically makes sense, but since there is nothing physically "there", the doc says I have IBS-C, and orders laxatives, which make me feel worse, and well, do give me diarrhea.

I still think there is something wrong. He also says, even though I have SIBO per culture from the duodenum via endoscopy, that it's probably not my problem because I don't have diarrhea. Well, I've been on websites of centers that deal with SIBO, particularly Johns Hopkins and a Doc at Cedar Sinai in LA, and they talk about how SIBO can present with diarrhea or constipation, but certainly not limited to diarrhea. I realize that is not topic here, but just throwing out as an example of how a doc was taught a certain "list" for a diagnosis, and then rules it out based on that. I won't go into that more here.

I realize (like the woman who just wrote about her daughter) there are people who may have very severe forms of MALS and vomit and be very sick, but maybe it's possible to have a more chronic presentation where it's bad enough to cause pain and nausea and well, things to not "work right", but not to the point of nausea. I am just trying to think logically about these things :).

One thing I'm learning from these forums, is that a lot of patients don't fit the "classic" profile. I look forward to hearing some more from you. I'm just really frustrated. I've gone to PT for 5 months, studied mediation with a Buddhist monk for a couple of years, listened to hours of IBS self hypnotherapy CDs, took singing lessons b/c that really focuses on diaphragmatic breathing (I'm also supposed to do for nausea), changed my diet, tried cutting out lactose, coffee, gluten, none of it changes the burning pain that now has me on the couch.

@kariulrich

@jmorgs I am so sorry to hear what you and your daughter are going through, and it looks like you have a bit of rough journey ahead but you are not alone. This is an awesome group of people, many who have been through what you and your daughter are experiencing now. She sounds like she is a strong surgical candidate and that surgery could minimize her symptoms greatly. Because of her added diagnosis it is always a bit more challenging. Recovery for me was long, however I had an open surgery/bypass. I think many people have long recovery, it is much like having a complete hysterectomy for open surgery. 6-8 weeks of the initial recovery then it is slow going but progressive change of symptoms over a years time. It is a differ recovery in that you feel better after surgery, but your body takes time to adjust to having blood flow. Many people who have surgery ( who don't post here) are completely recovered and do well after surgery with no residual effects, so please keep that in mind when reading posts. I just like to mention that because it can be overwhelming with reading others experiences.

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"Many people who have surgery ( who don't post here) are completely recovered and do well after surgery with no residual effects"
That is an excellent point Kari, and good to keep in mind!
I am very early on in exploring MALS, but from my reading, it seems that the surgery is very successful for a lot of people. I also think if something is left untreated for a long time, as seems to be happen often with this diagnosis, secondary problems can develop, so those can continue to cause some problems.
And, as you point out, those who are fixed by it are out living life, not lying around on a Digestive Disorders forum on a beautiful Saturday afternoon (at least where I live) 🙂

@elle1233 – I never vomited as part of my MALS symptoms. Always queasy and nausea at times, no appetite. I didn’t lose weight either which also is common with MALS. I never really knew how many of my ailments were showing similar symptoms! Bile ducts clogged and post meal pain or even pancreatitis, autoimmune inflammation from start to end and what turned out to be MALS.

@astaingegerdm

@elle1233 – I never vomited as part of my MALS symptoms. Always queasy and nausea at times, no appetite. I didn’t lose weight either which also is common with MALS. I never really knew how many of my ailments were showing similar symptoms! Bile ducts clogged and post meal pain or even pancreatitis, autoimmune inflammation from start to end and what turned out to be MALS.

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Very interesting, Ingegerd, TY for replying. How did your doctor come to suspect or find the MALS? I read on one website that it can be seen on a CT scan.

@elle1233

Very interesting, Ingegerd, TY for replying. How did your doctor come to suspect or find the MALS? I read on one website that it can be seen on a CT scan.

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It originally was found on on Doppler ultrasound of abdomen, but was considered a false positive because on CT and MRI blood flow appeared normal. Four years later my internist referred me to another university medical center for a second opinion. There I had a CT angiogram that clearly showed the compression of the celiac artery. It has to be an angiogram for diagnosis- not a regular CT with contrast.
Happy ending! Almost..

Does anyone experience back problems with MALS?

Yes

@kariulrich

@jmorgs I am so sorry to hear what you and your daughter are going through, and it looks like you have a bit of rough journey ahead but you are not alone. This is an awesome group of people, many who have been through what you and your daughter are experiencing now. She sounds like she is a strong surgical candidate and that surgery could minimize her symptoms greatly. Because of her added diagnosis it is always a bit more challenging. Recovery for me was long, however I had an open surgery/bypass. I think many people have long recovery, it is much like having a complete hysterectomy for open surgery. 6-8 weeks of the initial recovery then it is slow going but progressive change of symptoms over a years time. It is a differ recovery in that you feel better after surgery, but your body takes time to adjust to having blood flow. Many people who have surgery ( who don't post here) are completely recovered and do well after surgery with no residual effects, so please keep that in mind when reading posts. I just like to mention that because it can be overwhelming with reading others experiences.

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Thank you for your prompt reply and I apologize for my very delayed response. It has been a rather hectic couple of weeks since my initial post. My daughter has since had and endoscopy, and a gastric emptying study, both test her GI doctor wanted done to rule out any other issues. In between the two she was also admitted to the hospital for a couple of days after being found unconscious by her roommate from severe dehydration/electrolyte imbalance from all of the vomiting. They had her on a full liquid diet with one soft food meal a day but since then have restricted her to full liquid with 3 protein shakes a day until she has her vascular surgery consult on October 12th. That feels like a long wait and a long time for her to be on such a restricted diet when she is already so small but between the liquid diet and the Zofran every eight hours she at least seems to be experiencing much less pain and nausea. While it sounds like the road ahead could still be an uphill battle at times I am thankful for a diagnosis that finally explains all of the pain/nausea she has had over the years. She is thankful too although currently very mentally and physically drained and really wanting to be able to eat solid foods again!

@kariulrich

@bree11 Here is some very basic information about MALS: https://my.clevelandclinic.org/health/articles/median-arcuate-ligament-syndrome-mals
There are a few good papers on MALS geared toward the medical professional also, wish there more! There needs to be more awareness done on this condition. Have your doctors considered a GI motility study? For me most of my GI work up came back normal, I had a some motility issues but not significant enough to raise eyebrows. It is a long diagnostic road, but worth taking in the end. If the tests get too much, let the doctors know. Sometimes I needed to take a month off of testing just to get away from the hospital awhile. (With my doctor’s permission). I was fortunate that my Mayo team really believed in shared decision making. The fact you found a doctor that is willing to look further into MALS is priceless! That says a lot, and you may find that you may be guiding your care and teaching more than you expected. Don’t be afraid to tell him what you have learned.

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Sometimes all the testing makes things worse, so I agreed, if you need a break take it!

Hello I have been following the group for a while and reading the feed. I was diagnosed with MALS about 5 months ago. I have 2 arteries that first were shown compressed by a ligament in an ultrasound and than again in a CT. I have been very sick on and off since my teen years. Through all the illness, the severe stomach pain, the weight loss, the vomiting the diarrhea the multiple visits every year to the ER and several admits as well as exploratory surgeries which one ended up with my gallbladder removed, and still nothing. Until I went to Mayo clinic about 6 months ago and started to doctor for these symptoms that had suddenly persistently gotten the worst they had ever been. I underwent many many tests and saw several doctors. Than a doctor who had heard of MALS did some testing for this and called me the same evening at home after I had my tests and told me I should see cardiovascular. I have since underwent many pre-op clearance testing with GI, Cardiology and Internal Med. I also did a block to see if that would give me relief, in which it did, but sadly for only 3 days. It was 3 very happy and comfortable days! I am now waiting to see Cardiology again in hopes to be scheduled for surgery soon. Years of the pain, and suffering to hopefully have relief finally. On a side note, ten years ago I was diagnosed as a type one diabetic. I was diagnosed at another facility and doctored with them over the last several years. They told me my pancreas was dead and I would be a lifer as the rest of most TI diabetics. Since being a Mayo patient and seeing Endocrinology, I have learned that my pancreas is still working about 20% and they blood flow that has been cut off by the ligament from my arteries is most likely a sure cause that my pancreas has almost died and has given me the life of a diabetic. It is hard some days to know that other doctors could have caught all this, saved my pancreas so many years ago and I would be diabetes free. I am hopeful the blood flow that will be re- entered into my body once I have the MALS surgery will bring my pancreas back to life, but the doctors are only giving it a low chance of this happening. It is a harsh reality to swallow. This is my story and I wanted to share. I am nervous about having the surgery, as we have decided open is the best option. I will be so happy to eat and not have the pain any more.

@missmirandasue5

Hello I have been following the group for a while and reading the feed. I was diagnosed with MALS about 5 months ago. I have 2 arteries that first were shown compressed by a ligament in an ultrasound and than again in a CT. I have been very sick on and off since my teen years. Through all the illness, the severe stomach pain, the weight loss, the vomiting the diarrhea the multiple visits every year to the ER and several admits as well as exploratory surgeries which one ended up with my gallbladder removed, and still nothing. Until I went to Mayo clinic about 6 months ago and started to doctor for these symptoms that had suddenly persistently gotten the worst they had ever been. I underwent many many tests and saw several doctors. Than a doctor who had heard of MALS did some testing for this and called me the same evening at home after I had my tests and told me I should see cardiovascular. I have since underwent many pre-op clearance testing with GI, Cardiology and Internal Med. I also did a block to see if that would give me relief, in which it did, but sadly for only 3 days. It was 3 very happy and comfortable days! I am now waiting to see Cardiology again in hopes to be scheduled for surgery soon. Years of the pain, and suffering to hopefully have relief finally. On a side note, ten years ago I was diagnosed as a type one diabetic. I was diagnosed at another facility and doctored with them over the last several years. They told me my pancreas was dead and I would be a lifer as the rest of most TI diabetics. Since being a Mayo patient and seeing Endocrinology, I have learned that my pancreas is still working about 20% and they blood flow that has been cut off by the ligament from my arteries is most likely a sure cause that my pancreas has almost died and has given me the life of a diabetic. It is hard some days to know that other doctors could have caught all this, saved my pancreas so many years ago and I would be diabetes free. I am hopeful the blood flow that will be re- entered into my body once I have the MALS surgery will bring my pancreas back to life, but the doctors are only giving it a low chance of this happening. It is a harsh reality to swallow. This is my story and I wanted to share. I am nervous about having the surgery, as we have decided open is the best option. I will be so happy to eat and not have the pain any more.

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Your story is very familiar. There’s a Facebook group MALS Awareness Community that has great information and a very supportive group who can help you with many questions. I am scheduled for surgery in January with Dr. Hsu in Connecticut. He has the most experience with MALS. Please check out your options before you decide on treatment. If you have any questions, let me know!

For people who found laparoscopic surgery successful, was it felt immediately or was it more gradual over time? I had surgery 5 days ago. For the first 3 days, I felt great, then on the four day I had pain. Today is better. Also, for those on anti-dumping diets, could you completely go off of the diet after surgery or was take gradual too?

@tutorgrl

For people who found laparoscopic surgery successful, was it felt immediately or was it more gradual over time? I had surgery 5 days ago. For the first 3 days, I felt great, then on the four day I had pain. Today is better. Also, for those on anti-dumping diets, could you completely go off of the diet after surgery or was take gradual too?

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@tutorgrl -I had the laparoscopic surgery 2015. There was immediate relief of the severe pain I used to have after eating. However, there was other pain from the surgery. It affected the diaphragm where the ligament originated. After 5 months the original pain returned. The artery was still deformed from the ligament pressure. A vascular surgeon placed a stent and so far all is well.