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Median Arcuate Ligament Syndrome (MALS)
Digestive Health | Last Active: 9 hours ago | Replies (1229)Comment receiving replies
@racheldmark welcome to our humble group, happy you are advocating on behalf of your uncle. Have they considered giving him tube feedings or TPN to help his nutrional status and help with energy? Does he have any additional diagnoses? I am trying to understand why hospice and not a more conservative approach to nutrition and pain? Small meal, liquid based that are nutrient dense such as ensure is needed if he can tolerate that. MALS should not get to this point, I wonder if there is more going on...if he has stenosis again???
Replies to "@racheldmark welcome to our humble group, happy you are advocating on behalf of your uncle. Have..."
I remember a young man with Chron’s disease who had major difficulty maintaining weight. Also, after years of not eating regularly, he seemed to lack interest in the act of eating. He received tube feeding through the night. This way he could maintain a decent nutrional status. Maybe hospice care is not aggressive enough to improve his caloric intake. Also, at 73, the uncle could still have decent years ahead. I’m 74 and have spent too many years being miserable. I’m finally ok for now, but it is true that the medical world is less aggressive with older patients. I had to fight for myself.
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@kariulrich Thank you for the warm welcome and quick response, I am very touched that you are reaching our personally, this must be a lot for you to manage.
Please be patient with me, I am very new to a lot of these terms, and am playing catch up to understand what stenosis is, or how invasive a TPN might be - I will respond to those points when I have a chance to talk to Lou (he is resting now).
Lou's story is very sad. Tracking back, we determined that his MALS may have started back in 1999, and went misdiagnosed and untreated for so long. The ABQ medical system has really failed him in this regard. Over the years he has seen many internal gastro specialists, but due to health care limitations he did NOT have a Primary Care Physician that was tracking his health deterioration over time.
In 2017, my parents (his older sister) flew him to MA to be seen at Mass General, and he was officially diagnosed with MALs. After that things swung into effect quickly, but keep in mind that he had been living with MALS for almost 20 years(!!!) at this point.
+ May 24, 2017 -- First diagnosed by Dr. Said at Mass. General
+ July 13, 2017 -- Surgery done at University of New Mexico Hospital. Cancer oncologist Dr. Nir and vascular surgeon Dr Rana. - Celiac artery release and cordiozation. Partial removal of celiac nerve ganglia.
+ Aug 4, 2017 -- Follow up complication 2 weeks later, Dr, Rana. Pseudoaneurysm of splenic artery. Surgery- Splenic embolization.
+ May 15 and June 20, 2018 Nerve blocks done at Albuquerque Pain Management Clinic. Anesthesiologist Dr. Whalen.