Median Arcuate Ligament Syndrome (MALS)

I went to the doctors for pain I have been having for years. I have constant pain in my abdominal area. I have several scans done and they believe I have MALS (arcuate ligament syndrome). It’s my understanding they could determine it through scans. The Dr. wants me to get a nerve block if it works he said I have MALS if it doesn’t work I have something else. My question is are there some cases where a nerve block is required to determine MALS?

Thank you for your encouraging thoughts.

Kari, you are awesome.
I'm still hanging in there. Still 109 pounds at 6 foot,1inch. I can't gain any weight unless I can stop the pain and exhaustion.
My doctor has me taking a trial course of oxycodone, 5 mlg., 1/2 hour before I eat. I think it's working but I'm not comfortable about taking opioids. I keep a very close record of when and what I take in a daily notebook. I'm curious if anyone has ever taken opioids before eating and how successful they found it? The MALS surgery did not relieve the pain and exhaustion when I eat. Of course I eat small meals and avoid hard to digest foods.

Hello: My husband was on Opioids for three weeks and lost weight, lost appetite, and had difficulty staying awake. When we transferred to Mayo Clinic (for 3 months opioids were not used. Thank goodness.It was a challenge to find food he liked. He slowly began to gain weight.
I encouraged him to listen to Dr Amit Sood's Mindfulness tape that I listen to regularly. Although both of our medical issues are much different from yours...the lessons learned about how to really relax eased each of our very different pain. Dr Sood has written several
books that are a interest read on the Body, Brain & Mind connection which has helped me heal and deal with breathing.

Our body often need time to heal and if we can learn to incorporate mindfulness and tell our brain to ease the pain and relax
our nervous system we can heal better. I wish you all the best. Oh, Dr Amit Sood has done some entertaining yet helpful talks
that can be found on You Tube. I hope this helps.

@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.

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

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.

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!