Post MALS surgery and positive outcomes!

Hello @hansenshorses and welcome to Connect. I can understand your concern about your post-surgery symptoms. I would like to invite @astaingegerdm to this discussion as she has a MALs diagnosis as well.

Perhaps she can point you to members who have had experience with post-surgery symptoms and recovery.

How long ago were you diagnosed with MALS, @hansenshorses, what type of symptoms were you having?

Back in early 2018 I started getting nauseous. Through these six years I have gone to four different gastroenterologists, internal medicine Drs, allergists, dietitians and had numerous tests. I looked into all my medications thinking maybe they were causing it.
Recently had a hipa scan, internal parasites panel and pulled all my carpeting up in my house. Had a test for mold and also requested a kit for Sibo but haven’t used it. I kept being told it was probably something I was eating because of the indigestion, nausea, and pain. Or I was constipated and to take laxatives etc.
The last six months it was awful. Lost 18 pounds and have gotten so weak. I felt so terrible. All I could do was sit in my chair.
Finally, I went to a different gastroenterologist in late summer and she requested a CT Angio Abdomen pelvis of my abdomen. There was my answer- MALS.
High-grade ostial celiac stenosis.
I would have never thought to go see a vascular doctor. Thankfully, I kept researching and requesting tests otherwise the outcome may not be as favorable.
But I am so disappointed in my health care team. This should have been found. Look outside the box. Research! If you look it up I had the classic signs. I did have a US Abd Limited ultrasound in 5/4/2018 but with my classic signs of Mals a Ct Angio Abdomen should have been ordered. I had
indigestion, diarrhea and occasional pain maybe not as much as expected with MALS but present.
It’s hard to not grieve for those lost healthy, happy years but I am going to be grateful it was diagnosed and move forward toward the life I want to live. Almost 9% of my life feeling ill. One day at a time.

@hansenshorses
I have MALS too- it’s a sneaky condition. Symptoms can vary, but I think everyone has pain of varying degree.
Most doctors are not aware of the diagnosis- it is fairly rare.
I went to Mayo with different complaints. The test that finally diagnosed me was an abdominal Doppler ultrasound. However, my doctor didn’t think it was the problem. I also had autoimmune colitis.
3-4 years later I saw another GI who ordered the CT angio and I had surgery soon after.
I was OK for 6 months, then symptoms returned. The artery was kinked and a stent was placed and all was good with regular follow ups for a while.
A couple of years ago I started having several GI symptoms- nausea, lack of appetite, getting full fast and intense abdominal pain after meals- I was screaming with pain.
Turned out the celiac artery was still kinked, including the stent. A new stent was placed and with time symptoms disappeared.
I see the vascular surgeon once a year for an ultrasound. Right now it’s 50% blocked but I don’t have pain.
You don’t feel well yet- maybe check with your surgeon?
Also, recovery is different for everyone.
There are several members who post about MALS here. Search MALS and you will find some.
Just contact your doctor, you have suffered long enough to wait forever to feel well.

Go to Digestive Health Support group and search MALS.

Good morning! I too have Mals. Not surgery yet. But I’ve joined a site called Mals Pals. It’s very informative and all the people on this site really care as well. Lots of success stories. It’s a Facebook group. Love it. 🥰 you will feel better! Share your story.