Thank you so much and I will keep everyone updated ! And please know our thoughts and prayers are with everyone as well.
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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.
Thank you for your thoughtful reply. Yes the first surgeon said he hasn’t had favorable outcomes and wasn’t confident it would help. We have contacted others who actually specialize in this condition so we are eagerly awaiting those appointments. I agree this is a most difficult condition without a direct treatment. But finding the right team of clinicians that feel confident and imbue that sense of confidence and resilience in my daughter is the key. Because after reading here and on Facebook this is sadly a long road for our beautiful girl. Thank you for your feedback it helps so much .
Wow! Sounds like my daughter except she isn’t an athlete. She is a straight A Math major who had to defer her semester to the profound health change. I am anxiously awaiting a second opinion. They wrote her a script for pain relief but she is afraid it will hurt so she just continues to suffer. If we have any luck with our other medical specialist inquiries ill post. My prayers and thoughts for you both!
No worries. We will get her treatment expeditiously as possible. We have pending appointments with leaders in this area of medicine . The current surgeon just doesn’t have a lot faith in the MALS surgery so we feel it is essential to get feedback from others. He also only does the lap version unless on the table something goes wrong. She has a sluggish Gallbladder and a stenosis of abdominal artery above 80%. Thank you for your concern we will keep everyone posted and thank you for sharing your story it is very helpful.
We were given two sets of facts ;one the surgeon said despite the very positive angiogram he wasn't very enthusiastic about the surgery working or helping my lovely daughter. She recently was told her gallbladder though not diseased isn't functioning properly with a score of 18.5 . So we are taking our daughter for a second opinion at another teaching hospital . It is an awful condition and I can't imagine how you function with the pain. Our beautiful daughter just graduated high school in May at the top of her class with college as a Math major weeks away. Now she deferred her admission and awaits a resolution so her life can be resume again. She is such severe pain. She has so much pain after she and eats so little not more than 800 calorie a day with great effort. Thank you for sharing your experiences and for your kindness means the world to a nervous /worried mom.
Thank you for sharing your experience and medical information. We go for a second opinion soon at another teaching hospital. I appreciate everyone”s feedback it will help my daughter and I navigate this difficult condition with less fear and more confidence. Praying you feel better soon and get back to teaching.