She also had a positive provocative messenteric angiogram with a positive mals diagnosis with stenosis of the celiac artery. I thought it would be helpful to share that to my above message . Thank you all again!

Hi @worriedmom18, I am sorry to hear about your daugher and her MALS diagnosis. Some doctors are not comfortable with the MALS diagnosis or the surgery. It is a rare diagnosis and there has not been much if any substantial research. I would not hesitate getting a second or third opinion. I have heard that children do well with the laparoscopic approach, but I would ask the surgeon what their personal success rate is and how many surgeries they do a year. I know Mayo Clinic Rochester does MALS more cases than most. It is hard to figure this whole diagnosis out when there is a sluggish Gallbladder involved. Another resource is MALS PALS on facebook, there are a lot of parents that post there. I am more familiar with the open surgery, but will try and answer any questions you may have.

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 .

Please keep me updated! Yes it is a long road for many, but with that said I know of many success stories that have gone on to live a pain free life! They are out there, you just do jot hear about them on these support groups. Thinking of you and your family!

Hi Kari, I am in need of a good gastroenterologist, and a general doctor in the Scottsdale area. I am new to Scottsdale, and do not know anyone to get these names, and referrals. Please let me know a.s.a.p. with some names, and hopefully phone #'s.

Thanks so much!

J.P.

I wish I was familiar with the Scottsdale physicians, unfortunately I am not. I hope someone on here knows of someone. Have you looked on the MALS Pals Facebook page, they have a list of peer recommended physicians, but I believe the list is vascular surgeons.