Does anyone know if Mayo will review a case without seeing a patient? We are out of state and have had the diagnosis of SMAS confirmed (many, many times) – also has another area of extrinsic compression in the third part of the duodenum (angulated fixed deformity of proximal jejunum of uncertain cause). My daughter is 13 years old has been battling this disease for over 2 years. Had surgery to correct MALS almost a year ago. Mayo has always been known to have the best of the best doctors. I reached out to Mayo a couple years ago about taking a look at her case, but at that time they said they could not help (I am assuming because there were too many things going on and in-conclusive tests?) We are very concerned with knowing what the right thing to do is….I have been “playing doctor” for way too long and would love to have someone who is experienced and EDUCATED on this condition who can offer expertise and actually help my daughter. If anyone has any thoughts, please feel free to share!
*WAY more to her story – trying to keep the post short*
Thank you 🙂