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Post MALS surgery and still suffering
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.
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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?
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1 ReactionThank 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.
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1 ReactionI 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.
@kjschellin3310
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.
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.