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Primary Sclerosing Cholangitis (PSC) - Online Support Group

Seeking the best hospital to treat psc


#21

RoseSharron, we love Dr. brown. You are lucky to get an apt with him as he is the head guy at Cornell. And very difficult to get apts with. We were referred to him by a family friend at Leahy Clinic who knows him personally. Doing a second ERCP will be fine as there guys at this level want all there own testing. I have found that all the people we are working with at Cornell to be excellent. My son has been in and out of that hospital so many times, I have lost count. Not for PSC, but for UC and j-pouch complications.

Just contact me if you have any more questions, I’m happy to help. Good luck! Where are you seeing him, at Columbia or Cornell?


#22

Hi Jeffsmom

Thanks for the recommendation. We truly appreciate it and are keeping your son in our prayers. We are seeing Dr Brown at the York Ave location I believe on Oct 3, 2017… Wish we could have seen him sooner—at ER now and they want to do a 3rd ERCP in as many weeks, each new stent causes infection somehow. want to see what Cornell team thinks.


#23

Oh no! I’m so sorry. When you see Dr Brown, he will strongly recommend that you use his team of dr. The surgeon we use is Dr. Shukla. He is such a wonderful and kind and genial man. We need to get a gastroenterologist because the one we have been using left to NYU. I forget who they have suggested for us. It’s tough getting Dr. brown. We also saw him on York Ave. where are you from? And where are you currently being treated? I am taking a back seat right now to my son’s care. He is 27 and demanded we step back. I will step back and when he ends up back in the hospital, I am threatening to leave him there. He is not taking care of himself. In addition to thenPSC, he also has fatty liver disease. He has gained so much weight over the past year, it’s horrifying. He refuses to accept that he can’t eat shovel fills of food. So I have been told to pack off and let him self implode. Boy is that hard when you are so used to taking care of your child. We will see how it goes. Good luck to you and your family. This disease really sucks themlife out of you!

Dianne