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ruudolpho
@ruudolpho

Posts: 11
Joined: Jun 08, 2017

Post-MALS surgery

Posted by @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

REPLY

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

@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.

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.

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)

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

@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

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

@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

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

@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.

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

@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.

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

@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 ?

@jmmb @coffeelatte @worriedmom18 @joyful1 @atjmoney @bpayne @cornishrex @carolina58 @azbluebird @sarah1317 @jamorris9 @bree11 @lmtuska @evrose23 @lisa01 @malsman @artistgma @evileye00 @ruudolpho I wanted to tag each of you on this link. I have been messaging with Dr. W. Park
Chief, Vascular Surgery at Cleveland Clinic Abu Dhabi trained Mayo Clinic School of Medicine. Dr. Park gave me permission to post his notes on a case of MALS and Takayasu’s Arteritis. Although this is a very rare combination, I think his blog sheds some light on what MALS patients experience. Here the link: https://vascsurg.me/2016/11/26/takayasus-arteritis-driven-median-arcuate-ligament-syndrome-unusual-symptoms-demand-unusual-solutions/

@kariulrich

@jmmb @coffeelatte @worriedmom18 @joyful1 @atjmoney @bpayne @cornishrex @carolina58 @azbluebird @sarah1317 @jamorris9 @bree11 @lmtuska @evrose23 @lisa01 @malsman @artistgma @evileye00 @ruudolpho I wanted to tag each of you on this link. I have been messaging with Dr. W. Park
Chief, Vascular Surgery at Cleveland Clinic Abu Dhabi trained Mayo Clinic School of Medicine. Dr. Park gave me permission to post his notes on a case of MALS and Takayasu’s Arteritis. Although this is a very rare combination, I think his blog sheds some light on what MALS patients experience. Here the link: https://vascsurg.me/2016/11/26/takayasus-arteritis-driven-median-arcuate-ligament-syndrome-unusual-symptoms-demand-unusual-solutions/

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Thanks again @kariulrich that was an interesting article. My surgeon suggested looking into the celiac block if tomorrow’s procedure (if one is done) doesn’t help. I don’t know what will happen, he will see when he goes in, love that feeling. Don’t know if I want him to do something or not. I do in the sense that maybe it will help, but don’t because don’t want any stay in hospital and recovery time….you all know how that goes, and still feel lousy. Oh well we will see tomorrow….

@kariulrich

@jmmb @coffeelatte @worriedmom18 @joyful1 @atjmoney @bpayne @cornishrex @carolina58 @azbluebird @sarah1317 @jamorris9 @bree11 @lmtuska @evrose23 @lisa01 @malsman @artistgma @evileye00 @ruudolpho I wanted to tag each of you on this link. I have been messaging with Dr. W. Park
Chief, Vascular Surgery at Cleveland Clinic Abu Dhabi trained Mayo Clinic School of Medicine. Dr. Park gave me permission to post his notes on a case of MALS and Takayasu’s Arteritis. Although this is a very rare combination, I think his blog sheds some light on what MALS patients experience. Here the link: https://vascsurg.me/2016/11/26/takayasus-arteritis-driven-median-arcuate-ligament-syndrome-unusual-symptoms-demand-unusual-solutions/

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@jmmb you will be in thoughts all day tomorrow! You got this! Get some rest tonight and we can chat about the celiac block if that is needed. Sending healing hugs and hopefully you will have some awesome results!

@kariulrich

@jmmb @coffeelatte @worriedmom18 @joyful1 @atjmoney @bpayne @cornishrex @carolina58 @azbluebird @sarah1317 @jamorris9 @bree11 @lmtuska @evrose23 @lisa01 @malsman @artistgma @evileye00 @ruudolpho I wanted to tag each of you on this link. I have been messaging with Dr. W. Park
Chief, Vascular Surgery at Cleveland Clinic Abu Dhabi trained Mayo Clinic School of Medicine. Dr. Park gave me permission to post his notes on a case of MALS and Takayasu’s Arteritis. Although this is a very rare combination, I think his blog sheds some light on what MALS patients experience. Here the link: https://vascsurg.me/2016/11/26/takayasus-arteritis-driven-median-arcuate-ligament-syndrome-unusual-symptoms-demand-unusual-solutions/

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Thank you so much!!! I am so glad I found this site and you are awesome!!

@jmmb @ruudolpho How are you doing? Thinking of you both. I have an appointment coming up with the pharmacogenetics department at Mayo in a few weeks. I am hoping we can figure out what medications work best for me. I am tired of all the side effects, trial and error method. I can’t imagine having a third exploratory surgery, I am hoping to be able to manage the pain a bit better and get back to a better quality of life. I hope you both are doing well, please let me know when you feel up to it!

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