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

Interested in more discussions like this? Go to the Digestive Health Support Group.

lasirvent | @lasirvent | Feb 23, 2022

There’s an amazing support group with lots of information on mals on Facebook-it’s calls Mals Awareness. I had surgery 2 years ago,mine was nerve related not blood flow. It took 15 years to finally diagnose mals and for that I have lots of nerve damage.

lasirvent | @lasirvent | Mar 20, 2022

Go to Facebook and there’s a very helpful community that has amazing help pre and post mals surgery. Hope to see you there.

jdhughes4 | @jdhughes4 | Apr 21, 2022

Hi I was wondering if anyone could help us out- Our daughter (22y) had Mals surgery 3/3/22 (on her birthday) and is currently not really able to keep food down still. Some days she can eat a very small amount (a rice cake, Italian ice, a cracker?) and she is slightly better with drinks, however no more than 4/5 oz a day if she’s lucky- She did have 2 days a while back not consecutive that she ate half a waffle & part of a salad. She’s extremely nauseous and on 2 nausea meds every 4 hours & 6 hours and it’s still not keeping it at bay- She gets sick 3/4 times a week still. It’s heartbreaking to see but we don’t know what’s “normal” and what’s not.
I don’t want to panic or worry her by constantly hovering but 2.5 weeks after her surgery her PICC line got infected and when it was pulled she had a stroke (like WTH) this has been a nightmare and we just want to make sure she’s on the right track- Any advice or help would be appreciated- Thanks 🙂

thebrit | @thebrit | Jul 25, 2022

I am about to undergo MALS surgery plus a celiac plexus nerve block. I am 57 years old, have a long history of stomach/intestinal problems including celiac sprue, bowel resection, gastroparesis and after undergoing a double mastectomy following a breast cancer diagnosis, my stomach and intestines just stopped functioning. With a failure to thrive diagnosis, medications and a J/G tube allows me to manage on a day to day basis. I have constant stomach pain, chronic constipation and suffer with malnutrition.
I have had the pyloric muscle widened to see if this would help, it didn’t and caused massive indigestion.
My surgeon has told me that the MALS surgery should help my pain but may not help to correct all of my GI issues. Has anyone else gone through something similar who may be able to help me decide if it is worth even having this surgery?
Thank you so much!

loveyourself | @loveyourself | Jan 20, 2023

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

Hi! I had Mals syndrome surgery in August. It was a unique surgery it was a severe celiac artery stenosis & underwent complex diaphragmatic crus resection intra-operative celiac stenting. It was last Aug and I'm still not driving. My family isn't understanding my daughter said I can't solve problems because " she can't figure out how to drive" obviously she doesn't get it. Have anyone else had a problem with family being critical of recovery time? I doing well considering I walk up to 10,000 steps usually 5 plus days a week. The not able to drive is "the" hardest thing for me now! How long is the recovery as far as driving is concerned? I am having pain under my left breast. My surgeon said it could be my colon causing the pain
I have bloating everyday I look like I'm pregnant. I look kind of normal looking in the morning. When I eat anything it starts up again. I can eat but get nauseas? Can you or anyone else help me out? I'm guessing it will be up to a year before I'm healed? I'm looking forward to
reading more experience's & learning!

jbon8 | @jbon8 | Jan 21, 2023

In reply to @loveyourself "Hi! I had Mals syndrome surgery in August. It was a unique surgery it was a..." + (show)

I would get tested for SIBO.

Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Jan 21, 2023

@loveyourself
I have also had the MALS surgery and a celiac artery stent. I also recently had another stent placed.
You should feel much better by now. It is possible that the celiac artery is still not letting enough blood through- it could still be compressed- even with a stent. This happened to me.
My advice is to contact the vascular surgeon. They can check the artery with Doppler ultrasound.

ococean09 | @ococean09 | Nov 7, 2023

Has anyone had Nutcracker syndrome after MALS surgery?

lasirvent | @lasirvent | Nov 8, 2023

In reply to @ococean09 "Has anyone had Nutcracker syndrome after MALS surgery?" + (show)

It’s very common to have more than one vascular compression. Facebook has a group called Mals Awareness that has info about the connection.

ococean09 | @ococean09 | Nov 8, 2023

Thank you for responding.

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