I am writing about my sister Claragh who is 23 and has Alagille syndrome in the hope of some guidance regarding a spinal surgeon.
Unfortunately, she has every symptom and more, she has had one kidney removed, a liver transplant last year, unstable bloods since the transplant last year, a brain hemorrhage and minor heart problems. She now currently has severe scoliosis (81 degrees) and an ovarian cyst (9cm).
I am really just looking for support and any information that you can offer. We are living in Ireland where there is little support or people with alagille syndrome. We are at a stage now where her back needs to be operated on because it is causing her a lot of pain and it moved approx 9 degrees in the last 15 months so will only continue to get worse. In Ireland, the waiting list is very long and because she is so complicated, they are unsure if they would even carry out a procedure on her at all following an assessment. I as her sister would feel more confident if she was being operated on by someone who has experience with Alagille syndrome or possibly with someone who has had a liver transplant.
Basically, I am looking for an excellent spinal surgeon who has lots of experience. I understand that finding a surgeon to operate on someone who has had a liver transplant is almost impossible so I think we need a whole team.
I would be very grateful of some suggestions of surgeons/hospitals that would be able to carry out this operation on her back. We don't know where to look or where to go so any advice is more than welcome.
Thanks in advance,
Aisling.
