Wow, I am so sorry Kari that you haven't been doing as well as you had hoped. My daughter has had a consultation with a vascular surgeon who has a clinical interest in MALs he was very gentle and discussed all the possibilities and risks. We saw him just a week ago and he said he would call us after conferring with his colleagues at the university. My daughter has POTs and EDS as well as MALS. We have another consultation with a different set of surgeons also who also claim familiarity with MALS on 10/3 . She isn't doing well and even moving to an all liquid diet she still suffers in pain for hours per for each time she consumes any nutrition. The only thing that doesn't do that thankfully as of yet is water. This is a very frustrating and terrifying illness and the emotional consequences it having on my daughter emotionally is nearly as devastating as the physical implications. Anyway thank you for updating us on your condition and I hoping you find relief soon.

@worriedmom18 I understand what your daughter is going through, I also have POTS and EDS... so when your hit with symptoms from all three and you cannot sort them out it can be so overwhelming. I had worked with a nutritionist during a difficult time and what she suggested is eating a carb with a protein, then carb with veg/or fruit and keep doing that every hour or every few hours. I could tolerate carbs a bit better than anything. So I would have 1 cracker and a little peanut butter, then try a couple bites of toast and 1 mini carrot , cereal was good if it was dry, occasionally I could have milk. I know it is difficult when you are on a liquid only diet... my heart goes out to her. I was able to tolerate gummy vitamins at times. I know how fast our bodies become malnourished and it is so difficult to bounce back from, even after surgery. It sounds like you have found a great vascular surgeon, I found my surgeon the most support and understanding when it comes to MALS. Please know I am thinking of you and your daughter. Much love!

Thank you so much and I will keep everyone updated ! And please know our thoughts and prayers are with everyone as well.

Hugs!