First Name

Last Name

Albert Lea


Country of Residence
United States of America

Posts (370)

4 days ago · Median Arcuate Ligament Syndrome (MALS) in Digestive Health

Rachel! I did not realize your uncle was @ruudolpho! Lou, I did not put you and Rachel together for some reason. I have been thinking about you so much wondering how you were doing, you are constantly in my thoughts…we have struggled so many times together through the pain and weakness. It is such a honor to have Rachel on here and getting to know her also. My experience with Fiber has been good, with my MALS I get horrific diarrhea and being on tramadol helps that (as constipation is a side effect) it does tend to slow down my gut, I do use Gummy Fiber with D3, it is the only fiber I can tolerate. I get it from amazon, they do sell it at some drug stores https://www.amazon.com/Sundown-Naturals®-Fiber-Vitamin-Gummies/dp/B00DKN8E0M/ref=sr_1_3_a_it?ie=UTF8&qid=1544240861&sr=8-3&keywords=fiber+gummies+with+vitamin+d

4 days ago · Median Arcuate Ligament Syndrome (MALS) in Digestive Health

Thank you for sharing the link, I have had not read much up on it, but it sure seems like it is helping so many people! Thanks again Rachel!

5 days ago · Median Arcuate Ligament Syndrome (MALS) in Digestive Health

Rachel…please only share what you are comfortable with….please. We are here to support and privacy and confidentiality is first and foremost. It is absolutely fine to say you rather not share…I just want you to know that. No pressure. This is difficult for you too, caregiver wellness is so important. Please know we are here for both of you. Hugs

Tue, Dec 4 10:55pm · Median Arcuate Ligament Syndrome (MALS) in Digestive Health

@ukmalsman great words of wisdom! Thank you!

Tue, Dec 4 7:04pm · Median Arcuate Ligament Syndrome (MALS) in Digestive Health

@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.

Tue, Dec 4 6:48pm · Median Arcuate Ligament Syndrome (MALS) in Digestive Health

@astaingegerdm you make some very valid points. 73 seems very young and I really appreciate that you spoke up and said that the medical profession can be less aggressive with older patients. I truly believe that ageism is so ingrained in society, and needs to be addressed in the medical community. There definitely can be food adversion with our symptoms, but symptoms need to be treated aggressively when weight loss and malnutrition kick in. It can be a downward spiral quickly…hospice just does not seem right unless the patient truly understands. Homecare, palliative care yes…but hospice seems like the last resort.

Tue, Dec 4 12:37pm · Median Arcuate Ligament Syndrome (MALS) in Digestive Health

@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???

Mon, Dec 3 9:19am · Median Arcuate Ligament Syndrome (MALS) in Digestive Health

@kellylinn nice to meet you! Let us know how your celiac testing goes! What are you having done today? Welcome to Mayo Connect it is wonderful to have you hear, great photo! I have not gotten very good at all the filter settings! Love!!!