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Median Arcuate Ligament Syndrome (MALS)
Digestive Health | Last Active: Oct 29 2:54pm | Replies (1225)Comment receiving replies
@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.
Replies to "@kariulrich Thank you for the warm welcome and quick response, I am very touched that you..."
Hi Rachel
I know this question has been asked already, but why was there a Cancer surgeon in the team when your uncle Lou had surgery July 13 2017 at New Mexico Hospital? Had they found cancer which was treated at the same time? I ask because I know some people will not talk about cancer if they have been diagnosed with it; they will hide it from friends and even family. You said you came in late to this so you may not have all the information. I suggest you have a one on one with your uncle and ask him to tell you everything or if he will allow you, go through his medical records.
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@racheldmark I apologize about using medical terms and acronyms! Thank you for the reminder to be cognizant of medical jargon. Stenosis is the blockage of the artery, so usually when the ligament is released the artery opens and the stenosis or blockage improves. To know if this indeed happened a ultrasound of the artery (preferably intraopertive) needs to be done. When you have had MALS for so many years such as your uncle, the artery can remain kinked despite the ligament being released. For me I had a bypass of my celiac artery after the ligament was released. Some patients have stents placed...it all depends on the situation. Would your uncle consider getting a second opinion? I know it is difficult when he is so weak. I worry there maybe an underlying vascular problem that needs to be addressed. What type of work up has he had since Aug 2017? Any ultrasounds, angiography such at CT or MRI?? May I ask why a cancer surgeon was involved in the surgery? I apologize for so many questions. You and your uncle are in our thoughts, please know you are not alone.