Median Arcuate Ligament Syndrome (MALS)

@ruudolpho I am so HAPPY you brought up the question about pain medication, this is a topic that weighs heavily on my mind as I too use pain medication to maintain a quality of life that is enjoyable. So, in my experience I have found pain medication has helped in several ways. I use Tramadol, the side effect of possible constipation helps control the horrific diarrhea that some of us MALS patients experience on daily basis. I believe both pain and malabsorption of food leads to our significant weight loss, so pain medication slows down the gut helping alleviate this problem. Also, I have found if I take my meds prior to eating the pain is substantially less and I am able to eat nutrient dense foods compared to eating a diet mainly of carbs. If I use it as pain rescue after I have eaten is does not work as well. I know each of us are different and metabolize medication differently, so my experience may not be the same as yours, however with the chronic MALS patient's I have spoke with we all have had success with pain meds. Here is the problem, with today's political climate on the perceived opioid crisis patients have to deal with shame, being stigmatized and made to feel like less of a human because of our pain. You obviously cannot afford to loose more weight, and I am happy to hear you have a reasonable physician that is addressing your pain. In my personal humble opinion, for you, like me, we are chronic MALS patients, I think it is reasonable and therapeutic to try pain medication and see if it works for you. For me, I have also lost a significant amount of weight, have become malnourished and have had exhaustion despite 2 successful surgeries (I say successful because the pain went away for 3 years, however like you the symptoms returned) During the the successful years my weight maintained at 155-160 I am 5'7 - I preferred the heavier weight as I had more energy and could eat normal meals (Still had bowel issues). My lowest weight was about a month ago at 116. I am currently struggling to maintain 120. For me my physicians have changed my medication from preventive to rescue on active ... so we will see how that works. There are few things you need to be aware of in chronic use of pain meds, there is a difference between addiction and tolerance. With long term use your body gets use to the dosage and people find they have to increase there dose for the medication to be effective, this is called tolerance and it is NOT addiction. There are things you can do to help with this if you work with your doctor closely. If you are fearful of addiction let your doctor know. I have been on meds for decades and have not had to increase my dosage, I have been fortunate, each person is different. I just want to say, I believe in some patients pain medication can significantly improve their quality of life, and I do believe it has many benefits for patients such as ourselves. There is a risk for addiction, but that is a risk for many medications, not just pain medication. May I ask, why you are uncomfortable taking pain medications? (I know this is a personal question, so do not feel obligated to respond). I have spoke with so many patients that this is a huge step, and when they find they are useful and improve their quality of life they become ashamed as if they were not strong enough to handle to daily pain that is dished out to them. As a nurse and as a patient I believe our medical community has done a disservice to many chronic pain patients.

Hi Jill
I am so sorry you're still having problems with MALs, it's funny you should mention you were always skinny so there was not much weight to lose. I was the same, all my life I was skinny with abdominal pain on and off; maybe it is something we are born with that afftects our matabolism? (I wonder how many other MALs sufferers were slim in their youth?) You mentioned that your velocity is up again and they suggested a balloon; I think you were quite right to hold off. I have read a lot of talk about stenosis of the artery, has the consultant mentioned any dialation. I have stenosis of the celiac artery, but it is also dialated at the other end. I only mention this because my consultant advised me not to fly, which meant I missed my older brothers wedding which was abroad. It is a question you should ask your consultant. Your consultant seems to focus on the stenosis and blood flow. Have they looked at your Celiac Plexus which is a bundle of nerves near your Celiac trunk. Has that been affected by the ligament compression? There may be scaring/scar tissue on the celiac plexus which may be the source of most of your pain. Finally I'm guessing that if you had an angioplasty in the past they also performed surgery to release the median arcuate ligament from compressing the artery. I am new to Mayo so I don't know what procedures or pain relief you have tried. I put a post up about meds so if you have any questions please ask. Keep writing and posting as there are so many people in your situation that need the information.
Take care,
Mark

Hi Kari, sorry it took me so long to get back to you. I have been busy with doctors and researching what that heck is wrong with me!!!Ha Ha. I am so sorry you are struggling with the pain again. I never had the problem of the weight loss. For my first surgery the doctor even said he wouldn't have suspected MALS because I wasn't loosing weight. I had always been skinny, but I had stomach problems for as long as I can remember so I think I just got used to it and adjusted. The energy is a huge factor. I am sorry.
I am still struggling as well. At my last vascular follow up my celiac velocity was up. It was 340 or around that. My numbers have been higher. My sma however decreased. I am weird. Nothing with me is normal. My SMA velocities go up and down. My celiac always seems to go up until some intervention. He said we could do a balloon again, but I thought we should wait. I have so much going on trying to figure out all this dysautonomia stuff. I have a "POTS overlap, whatever that is. My primary, who is amazing, says definitely dysautonomia and the pots is secondary to that and some mast cell issues. The problem is I have so many things going on there is no clear diagnosis except for MALS. I go back the end of Nov. for another ultra sound. I am not trying to be negative, but I will be shocked if it is the same or better. I am not sure what to do then. That will be the fifth time going in. I am still on the iv hydration at home. I do 2 liters a day, but I am still dehydrated. Nothing like I was though. I can't drink water. It makes me nauseous and hurts my stomach.
My daughter is getting married in June in Jamaica. Since we have no family and she always wanted to get married on the beach, why not. I am so scared I wont feel well. My goal is to be better, or at least able to just do the flight. We booked it so I have a few days of rest before the wedding. It is not a big fancy thing, but I want to be 100% for her. She was so close to my parents and I know it's killing me and must be her that they won't be there, I have to be strong. So that is my motivation.
Anyway, sorry I am going on. I hope you start feeling better. Is it your artery narrowing again, or the nerves or you don't know? I'm sorry. You are such a kind and giving person, you shouldn't have to keep dealing with this. I will be sending you some positive healing vibes. Take care.
Jill

Hi Jill, I have been struggling the past year with the pain coming back and the past 6 months or so my weight has been dropping. So frustrating, I just don’t want to continue down the road where the weight loss becomes more of an issue. We have all been down this road, dealing with the pain is an issue, but my concerns are taking care of my family, decreased energy. Food aversion is probably the most difficult to deal with, out of all the symptoms. How are you doing??

Completely understand your concerns, and the side effects are annoying. For me Tramadol does not give me that out of it dizzy feeling, but oxycodone that I used after surgery did! I do believe those side effects get less over time. I am glad you have an appointment on Friday with your physician, they will be able to reassure you about accidental overdose etc.. @astaingegerdm I tried gabapentin and I felt like a zombie on that medication, so good to hear that it worked well for you, and you are right about it helping nerve pain. I do believe our pain is multi-faceted, for me Nitro sublingual works well when my pain is severe, however taking it orally as a long acting meditation I had headaches and it was not effective as a preventative med. I do think my pain is both nerves and continued vascular pain. My thinking is that I get vasoconstriction or vasospasms in my graft area and possibly in other arteries with eating. Just a thought. Wish we could figure out the cause!

Thank you Kari.
One concern I have is that patients on opioids could accidentally overdose. I take a low dose, one 5 mlg. tablet before a meal.
Another concern is the annoying side effects, feeling out-of-it, and dizzy. I guess I need to get used to it. I will be seeing my doctor this Friday and will discuss these issues.
Once again. Kari, we are all so lucky to have you as a mentor. You have so much compassion.

Hi Kari, Are you feeling okay? It seems like you are having issues again from the post. I hope you are doing okay.
Jill

@ruudolpho I am so HAPPY you brought up the question about pain medication, this is a topic that weighs heavily on my mind as I too use pain medication to maintain a quality of life that is enjoyable. So, in my experience I have found pain medication has helped in several ways. I use Tramadol, the side effect of possible constipation helps control the horrific diarrhea that some of us MALS patients experience on daily basis. I believe both pain and malabsorption of food leads to our significant weight loss, so pain medication slows down the gut helping alleviate this problem. Also, I have found if I take my meds prior to eating the pain is substantially less and I am able to eat nutrient dense foods compared to eating a diet mainly of carbs. If I use it as pain rescue after I have eaten is does not work as well. I know each of us are different and metabolize medication differently, so my experience may not be the same as yours, however with the chronic MALS patient's I have spoke with we all have had success with pain meds. Here is the problem, with today's political climate on the perceived opioid crisis patients have to deal with shame, being stigmatized and made to feel like less of a human because of our pain. You obviously cannot afford to loose more weight, and I am happy to hear you have a reasonable physician that is addressing your pain. In my personal humble opinion, for you, like me, we are chronic MALS patients, I think it is reasonable and therapeutic to try pain medication and see if it works for you. For me, I have also lost a significant amount of weight, have become malnourished and have had exhaustion despite 2 successful surgeries (I say successful because the pain went away for 3 years, however like you the symptoms returned) During the the successful years my weight maintained at 155-160 I am 5'7 - I preferred the heavier weight as I had more energy and could eat normal meals (Still had bowel issues). My lowest weight was about a month ago at 116. I am currently struggling to maintain 120. For me my physicians have changed my medication from preventive to rescue on active ... so we will see how that works. There are few things you need to be aware of in chronic use of pain meds, there is a difference between addiction and tolerance. With long term use your body gets use to the dosage and people find they have to increase there dose for the medication to be effective, this is called tolerance and it is NOT addiction. There are things you can do to help with this if you work with your doctor closely. If you are fearful of addiction let your doctor know. I have been on meds for decades and have not had to increase my dosage, I have been fortunate, each person is different. I just want to say, I believe in some patients pain medication can significantly improve their quality of life, and I do believe it has many benefits for patients such as ourselves. There is a risk for addiction, but that is a risk for many medications, not just pain medication. May I ask, why you are uncomfortable taking pain medications? (I know this is a personal question, so do not feel obligated to respond). I have spoke with so many patients that this is a huge step, and when they find they are useful and improve their quality of life they become ashamed as if they were not strong enough to handle to daily pain that is dished out to them. As a nurse and as a patient I believe our medical community has done a disservice to many chronic pain patients.

Thank you for mentioning alternatives and helpful additions to pain medications @llwortman. Mindfulness is a great tool for decreasing the anxiety that comes along with MALS pain and symptoms. I do believe some MALS patients need long-term pain medications in addition to alternative therapies. There has been so much opioid shaming in the media and misinformation, that chronic pain patients are suffering unnecessarily.