Post MALS surgery and still suffering

Posted by kjschellin3310 @kjschellin3310, Mar 20, 2022

I had surgery to attend to a positive diagnosis from MALS in September of 2021. The pain prior to surgery was horrific, so I was quite hopeful for relief. Following directions to a “T” - I was truly hopeful that the pain I was still experiencing was just a fluke. I continued losing weight rather than gaining and I have to admit, the heart burn that was being treated with medication was becoming even more problematic - almost worse than ever to a point where I would describe it as debilitating. The doctor treating me continued to run different tests trying to figure out what else could be causing this pain to the point where I almost feel like the Operation game - just that the little red nose never quite gets illuminated because they can’t quite figure out what the answer is that is causing me the pain. I am open to any suggestions - In the process of moving to Florida so plan to just hopefully take all of the tests and files and pray someone with new eyes can figure out this dilemma - I would just like to eat with out burning or severe pain. Thank you in advance.

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

Colleen Young, Connect Director | @colleenyoung | Mar 20, 2022

Welcome @kjschellin3310. There are a couple of related discussions that you may be interested in reviewing:
- Post-MALS surgery: https://connect.mayoclinic.org/discussion/post-mals-surgery/
- Median Arcuate Ligament Syndrome (MALS): https://connect.mayoclinic.org/discussion/median-arcuate-ligament-syndrome-mals/

I'll tag a few fellow members who may be able to offer their thoughts and tips, members like @astaingegerdm @stephcaggiano @akitamama @jhmontrose @lety83 @lasirvent @ukmalsman @blessedgma

Oh, I remember that Operation game. That's not a pleasant analogy. I do hope you get relief soon. You mentioned that you will be moving to Florida soon. Have you already found a physician with expertise in MALS?

kjschellin3310 | @kjschellin3310 | Mar 21, 2022

In reply to @colleenyoung "Welcome @kjschellin3310. There are a couple of related discussions that you may be interested in reviewing:..." + (show)

Thank you for the articles and links. And no I will be looking for doctors in the Boca Raton/ Fort Lauderdale area. I have Lupus so will be starting from scratch which is a little overwhelming. For now, I plan to return to the Hospital for Special Surgeries to see my doc until I can dial things in. Obviously, this is a little scary, but I have to have faith all will be well.
Any recommendations are welcomed. Thanks in advance.

lety83 | @lety83 | Mar 22, 2022

I wish you luck. I just had surgery in November. I’m still experiencing so much pain when I eat. I’m currently looking for answers and in the process of sending my records to Mayo. My surgeon said, I don’t think you have MALS because you haven’t got better” just repeated my ultrasound today to see if there was any changes.

lety83 | @lety83 | Mar 22, 2022

In reply to @lety83 "I wish you luck. I just had surgery in November. I’m still experiencing so much pain..." + (show)

@kjschellin3310

kjschellin3310 | @kjschellin3310 | Mar 22, 2022

In reply to @lety83 "I wish you luck. I just had surgery in November. I’m still experiencing so much pain..." + (show)

I will say prayers for you - I did have a positive MALS diagnosis and it appeared to be “statistically corrected” in the eyes of insurance, but the acid reflux appears to have gotten worse ten-fold and the pain has definitely not subsided - I have to take a break, as my medical bills at this point with the amount of tests done are enough to buy a sports car, and I simply cannot justify adding to that at this time. I just have to endure the pain for now. Praying has to be the answer for the time being. Prayers for you as well.

jhmontrose | @jhmontrose | Mar 22, 2022

In reply to @kjschellin3310 "I will say prayers for you - I did have a positive MALS diagnosis and it..." + (show)

I would look into Bravo Ph testing for acid reflux when you are ready to look into that. I dealt with acid reflux for many years prior to the MALS diagnosis. The MALS pain was different for me, sharp and deep. I had a LINX reflux implant put in laparoscopically during my first MALS surgery (which failed to fix MALS) and the implant was successful stopping the reflux.

reneemb | @reneemb | May 30 10:10pm

My son just had the DaVinvi surgery on his compressed artery. The vascular surgeon said he saw the compression and was able to release it. We are almost 3 weeks out and my son is feeling kind of worse. He said the pain is constant now. Does this sound like possible
Post surgery pain still?? Should we give it
Time.

lasirvent | @lasirvent | May 31 8:41am

In reply to @reneemb "My son just had the DaVinvi surgery on his compressed artery. The vascular surgeon said he..." + (show)

Hi! I’m sorry your son is going through this. What exactly did the surgeon do robotically? Did he release the Mesenteric Ligament? Did he address the nerves? There’s a group on Facebook that has tons of information about Mals and very helpful people.

reneemb | @reneemb | May 31 9:43am

In reply to @reneemb "My son just had the DaVinvi surgery on his compressed artery. The vascular surgeon said he..." + (show)

He used the da Vinci and was able to release the ligaments that were pressing on his artery. I did not hear any other Than that.

Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | May 31 9:56am

In reply to @reneemb "My son just had the DaVinvi surgery on his compressed artery. The vascular surgeon said he..." + (show)

@reneemb
This type of discomfort and pain is not normal- you should contact the surgeon at once.
I had the surgery some years ago- there was no pain post— op and it would be very u unusual.
Im sorry your son is suffering so much- I remember the pain too well.

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