1. < Digestive Health

Post-MALS surgery

Posted by ruudolpho @ruudolpho, Sep 22, 2017

I am 3 months post MALS surgery. I would like to hear from anyone who has had the MALS surgery but has not felt any improvement.
I continue to eat very little as the pain and discomfort and exhaustion kick in by 3 or 4 PM. in the afternoon and I can no longer eat for the rest of the day. I manage to consume about 1600-1800 calories and 50 grams of protein a day.
It is very difficult to sleep or fall asleep at bedtime, (10 PM.) I take Lyrica which is supposed to calm the inflamed nerves, also Tylenol. These drugs don't seem to help. I understand the surgery has about a 50% success rate.
I'm 71 years old, 6 foot, one and I weigh 114 pounds. I'm very weak and can not be up for more than 15 minutes or less. I think the weakness is from my low body weight and from the need to recover from the open surgery.
Are there any published materials, books or medical journal articles or patient histories available to purchase?
I would greatly welcome any comments or shared experiences from other patients. Lou D'Amico

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Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 1, 2017

Hi @ruudolpho, Welcome to Connect.
You'll find an active discussion with fellow Connect members talking about MALS here: https://connect.mayoclinic.org/discussion/median-arcuate-ligament-syndrome-mals/ Kari has shared many resources there that may interest you.

I'm sorry to hear that you've experience little to no improvement since surgery. I'm tagging fellow MALS members to see if they have surgery experiences, tips about sleeping and reference articles to share with you. @kariulrich @jmmb @coffeelatte @worriedmom18 @carolina58 @azbluebird and @artistgma

REPLY
2 replies
Kari Ulrich, Alumna Mentor | @kariulrich | Oct 1, 2017

@ruudolpho welcome! I am sorry I missed your post, however your timing is great as I have been asking the same questions to another group I am on called MalsPals (Facebook). My quick history: I had celiac bypass in 2009 with removal of ganglion tissue and bovine patch angioplasty of my hepatic/speanic artery. Had a second surgery (2105) due to MALS symptoms returning, revision done of my bypass, removal of scar tissue etc. Approximately 1 month ago had celiac block due to pain returning, that helped about 60 percent but the pain has slowly returned, sometimes the pain can be quite severe. Tramadol has been a great help to me preventing the pain. Doctors are reluctant to prescribe Tramadol, which I completely understand. One doctor mentioned starting on a calcium channel blocker. I started on Norvasc about 3 days ago and I have noticed it is beginning to help. I have a history of Fibromuscular Dysplasia (vascular disease) and Ehlers-Danlos Syndrome which complicates my case. In my humblest opinion, 3 months is still in the early part of your recovery. Each surgery took me approximately a year to recover fully from. Surgery relieved the pain I had, but not the bowel issues. I do not regret either surgery, I am very grateful I had the option to have surgery as it gave me back my quality of life for many years. From my experience you will gain strength slowly! It is important to keep eating 5-6 small meals a day, including a protein in each small meal.... again frequent small meals. I think in time you will be able to tolerate more nutritious foods as you heal however the process is slow, be patient. The second thing I highly recommend is walking, even if you are weak. I walked 2-3 times a day, very short distances... a 1/2 a block and worked my way up to being able to walk around the block 2-3 times, WITH ASSISTANCE! I was also very weak, and I had to hold onto my husband or son's arm for several months. It is a commitment for both you and your family or friends. Maybe for you it would be best to walk a loop around the house (Indoors) I started out walking in circles in my kitchen and living room, kinda funny because all of my cats and dogs would follow right behind me- a mini parade! I know this sounds overwhelming but take one moment at a time. I am hopeful you will get some relief as I did, but you have to be very patient because healing is slow. There is a very limited amount of published material on MALS, unfortunately we have a lot more work to do in the area of research. I will see if I have anything current I can post for you. Please feel free to ask questions and know that we are with you in this journey.

REPLY
3 replies
Kari Ulrich, Alumna Mentor | @kariulrich | Oct 1, 2017

May 2016
Median Arcuate Ligament Syndrome—Review of This Rare Disease
Erinn N. Kim, MD1,2; Kathleen Lamb, MD3; Daniel Relles, MD3; et al Neil Moudgill, MD4; Paul J. DiMuzio, MD3; Joshua A. Eisenberg, MD5
Author Affiliations
JAMA Surg. 2016;151(5):471-477. doi:10.1001/jamasurg.2016.0002
http://jamanetwork.com/journals/jamasurgery/article-abstract/2498851
Abstract
Importance Median arcuate ligament (MAL) syndrome is a rare disease resulting from compression of the celiac axis by fibrous attachments of the diaphragmatic crura, the median arcuate ligament. Diagnostic workup and therapeutic intervention can be challenging.

Objective To review the literature to define an algorithm for accurate diagnosis and successful treatment for patients with MAL syndrome.

Evidence Review A search of PubMed (1995-September 28, 2015) was conducted, using the key terms median arcuate ligament syndrome and celiac artery compression syndrome.

Findings Typically a diagnosis of exclusion, MAL syndrome involves a vague constellation of symptoms including epigastric pain, postprandial pain, nausea, vomiting, and weight loss. Extrinsic compression of the vasculature and surrounding neural ganglion has been implicated as the cause of these symptoms. Multiple imaging techniques can be used to demonstrate celiac artery compression by the MAL including mesenteric duplex ultrasonography, computed tomography angiography, magnetic resonance angiography, gastric tonometry, and mesenteric arteriography. Surgical intervention involves open, laparoscopic, or robotic ligament release; celiac ganglionectomy; and celiac artery revascularization. There remains a limited role for angioplasty because this intervention does not address the underlying extrinsic compression resulting in symptoms, although angioplasty with stenting may be used in recalcitrant cases.

Conclusions and Relevance Median arcuate ligament syndrome is rare, and as a diagnosis of exclusion, diagnosis and treatment paradigms can be unclear. Based on previously published studies, symptom relief can be achieved with a variety of interventions including celiac ganglionectomy as well as open, laparoscopic, or robotic intervention.

REPLY
Kari Ulrich, Alumna Mentor | @kariulrich | Oct 1, 2017

I am hoping this works... It is the most current data I could find on MALS outcomes, it looks like a small study base but it is something to start with!

Shared files

MALS Outcomes (MALS-Outcomes.pdf)

REPLY
Kanaaz Pereira, Connect Moderator | @kanaazpereira | Oct 2, 2017

Hi @ruudolpho,

Kari has provided some invaluable information, and I thought you may also wish to view these journal articles about MALS surgery; the first one discusses laparoscopic procedure, and the second article has case studies and diagnostics about endovascular treatment:
1. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5217142/
2. http://www.vasculardiseasemanagement.com/content/endovascular-approach-treat-median-arcuate-ligament-compressing-syndrome

REPLY
1 reply
Kari Ulrich, Alumna Mentor | @kariulrich | Oct 2, 2017
In reply to @kanaazpereira "Hi @ruudolpho, Kari has provided some invaluable information, and I thought you may also wish to..." + (show)
@kanaazpereira

Hi @ruudolpho,

Kari has provided some invaluable information, and I thought you may also wish to view these journal articles about MALS surgery; the first one discusses laparoscopic procedure, and the second article has case studies and diagnostics about endovascular treatment:
1. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5217142/
2. http://www.vasculardiseasemanagement.com/content/endovascular-approach-treat-median-arcuate-ligament-compressing-syndrome

Jump to this post

Thank you Kanaaz for researching these articles! I appreciate it!

REPLY
ruudolpho | @ruudolpho | Oct 2, 2017
In reply to @colleenyoung "Hi @ruudolpho, Welcome to Connect. You'll find an active discussion with fellow Connect members talking about..." + (show)
@colleenyoung

Hi @ruudolpho, Welcome to Connect.
You'll find an active discussion with fellow Connect members talking about MALS here: https://connect.mayoclinic.org/discussion/median-arcuate-ligament-syndrome-mals/ Kari has shared many resources there that may interest you.

I'm sorry to hear that you've experience little to no improvement since surgery. I'm tagging fellow MALS members to see if they have surgery experiences, tips about sleeping and reference articles to share with you. @kariulrich @jmmb @coffeelatte @worriedmom18 @carolina58 @azbluebird and @artistgma

Jump to this post

Hi Colleen,
I so appreciate all that you and Kari are doing to help people who have MALS.
Thank you
Louis

REPLY
ruudolpho | @ruudolpho | Oct 2, 2017
In reply to @kariulrich "@ruudolpho welcome! I am sorry I missed your post, however your timing is great as I..." + (show)
@kariulrich

@ruudolpho welcome! I am sorry I missed your post, however your timing is great as I have been asking the same questions to another group I am on called MalsPals (Facebook). My quick history: I had celiac bypass in 2009 with removal of ganglion tissue and bovine patch angioplasty of my hepatic/speanic artery. Had a second surgery (2105) due to MALS symptoms returning, revision done of my bypass, removal of scar tissue etc. Approximately 1 month ago had celiac block due to pain returning, that helped about 60 percent but the pain has slowly returned, sometimes the pain can be quite severe. Tramadol has been a great help to me preventing the pain. Doctors are reluctant to prescribe Tramadol, which I completely understand. One doctor mentioned starting on a calcium channel blocker. I started on Norvasc about 3 days ago and I have noticed it is beginning to help. I have a history of Fibromuscular Dysplasia (vascular disease) and Ehlers-Danlos Syndrome which complicates my case. In my humblest opinion, 3 months is still in the early part of your recovery. Each surgery took me approximately a year to recover fully from. Surgery relieved the pain I had, but not the bowel issues. I do not regret either surgery, I am very grateful I had the option to have surgery as it gave me back my quality of life for many years. From my experience you will gain strength slowly! It is important to keep eating 5-6 small meals a day, including a protein in each small meal.... again frequent small meals. I think in time you will be able to tolerate more nutritious foods as you heal however the process is slow, be patient. The second thing I highly recommend is walking, even if you are weak. I walked 2-3 times a day, very short distances... a 1/2 a block and worked my way up to being able to walk around the block 2-3 times, WITH ASSISTANCE! I was also very weak, and I had to hold onto my husband or son's arm for several months. It is a commitment for both you and your family or friends. Maybe for you it would be best to walk a loop around the house (Indoors) I started out walking in circles in my kitchen and living room, kinda funny because all of my cats and dogs would follow right behind me- a mini parade! I know this sounds overwhelming but take one moment at a time. I am hopeful you will get some relief as I did, but you have to be very patient because healing is slow. There is a very limited amount of published material on MALS, unfortunately we have a lot more work to do in the area of research. I will see if I have anything current I can post for you. Please feel free to ask questions and know that we are with you in this journey.

Jump to this post

Thank you Kari for your kind support.
You are doing a wonderful and kind thing, helping others with MALS.
Louis

REPLY
Kari Ulrich, Alumna Mentor | @kariulrich | Oct 2, 2017
In reply to @kariulrich "@ruudolpho welcome! I am sorry I missed your post, however your timing is great as I..." + (show)
@kariulrich

@ruudolpho welcome! I am sorry I missed your post, however your timing is great as I have been asking the same questions to another group I am on called MalsPals (Facebook). My quick history: I had celiac bypass in 2009 with removal of ganglion tissue and bovine patch angioplasty of my hepatic/speanic artery. Had a second surgery (2105) due to MALS symptoms returning, revision done of my bypass, removal of scar tissue etc. Approximately 1 month ago had celiac block due to pain returning, that helped about 60 percent but the pain has slowly returned, sometimes the pain can be quite severe. Tramadol has been a great help to me preventing the pain. Doctors are reluctant to prescribe Tramadol, which I completely understand. One doctor mentioned starting on a calcium channel blocker. I started on Norvasc about 3 days ago and I have noticed it is beginning to help. I have a history of Fibromuscular Dysplasia (vascular disease) and Ehlers-Danlos Syndrome which complicates my case. In my humblest opinion, 3 months is still in the early part of your recovery. Each surgery took me approximately a year to recover fully from. Surgery relieved the pain I had, but not the bowel issues. I do not regret either surgery, I am very grateful I had the option to have surgery as it gave me back my quality of life for many years. From my experience you will gain strength slowly! It is important to keep eating 5-6 small meals a day, including a protein in each small meal.... again frequent small meals. I think in time you will be able to tolerate more nutritious foods as you heal however the process is slow, be patient. The second thing I highly recommend is walking, even if you are weak. I walked 2-3 times a day, very short distances... a 1/2 a block and worked my way up to being able to walk around the block 2-3 times, WITH ASSISTANCE! I was also very weak, and I had to hold onto my husband or son's arm for several months. It is a commitment for both you and your family or friends. Maybe for you it would be best to walk a loop around the house (Indoors) I started out walking in circles in my kitchen and living room, kinda funny because all of my cats and dogs would follow right behind me- a mini parade! I know this sounds overwhelming but take one moment at a time. I am hopeful you will get some relief as I did, but you have to be very patient because healing is slow. There is a very limited amount of published material on MALS, unfortunately we have a lot more work to do in the area of research. I will see if I have anything current I can post for you. Please feel free to ask questions and know that we are with you in this journey.

Jump to this post

@ruudolpho please keep me updated how your progress is doing, It is such a difficult and long recovery.

REPLY
Kari Ulrich, Alumna Mentor | @kariulrich | Oct 2, 2017

@ruudolpho one thing I am wondering is if you are not getting adequate pain control due to the surgical incision and healing, or if something else is going on post op? Have you let your surgeon know that your recovery is not progressing well ?

REPLY
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