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Primary Sclerosing Cholangitis (PSC) - Online Support Group

Mayo Clinic

I am headed to the Mayo Clinic for a second opinion on my small canalicular type PSC. Does any one have experience going through Mayo with Dr. Piet de Groen?

Thanks,

EAD3

I have no experance with the doc you mentioned but I can say that mayo saved my life! My doctor had dignosed me with PSC and was lying to me telling me that i did not have a dominant stricture. Went to mayo they told me I had 9CM dominant stricture and dialted it for me. I have been symptom free since they helped me.

Thanks, njzuk, for that possible happy scenario!

EAD3

The Mayo Clinic second opinion was an incredible experience - very, very thorough and added great insight into my disease status. I can recommend Dr. P. de Groen with great enthusiasm and the Mayo Clinic experience as exceeding all of my expectations. Dr. de Groen must have spent three hours face to face with me and also discovered another disease that needs evaluation.

Glad to hear it was such a positive experience. Wow! Face to face with the doctor for 3 hours. I'm very happy for you and for the result from this evaluation. Even with the discovery of another disease - you needed to know, right? -Dana

Yes, Dana, it will need evaluation.

Another plus for Mayo is the Patient Information Portal, which gives the patient immediate on-line access to lab work, doctor's notes and a myriad of other things. The Dr. is also willing to work with my hepatologist back home in St. Louis so that all of the further tests I need will be done.

Stay Healthy!

EAD3

danabee said:

Glad to hear it was such a positive experience. Wow! Face to face with the doctor for 3 hours. I'm very happy for you and for the result from this evaluation. Even with the discovery of another disease - you needed to know, right? -Dana

I work at mayo clinic, and my daughter has Psc. Mayo is one of the top places to be with this disease!

My experience at Mayo was with Dr.Goers. Like the other writers, my experience was excellent.

I live in St. Louis, MO and the Mayo Clinic has recommended a repeat ERCP with some other testing. I’m thinking about the traveling expenses to Mayo, Winter weather in Minnesota, and about maybe having this done at Washington Unversity in St. Louis. Does anyone have experience with the hepatologists there? In partiicular, Dr. Jacquelyn Fleckenstein?

I see no one has answered your questions. I don't have personal experience with the transplant center in St. Louis but do know someone pretty well (from psc-support@yahoo) who had her transplant there. She was very happy with her care there and had a good result. I think it's been 4 years since her tx. Washington University has a stellar reputation. You can always google Dr. Fleckenstein and look up her background. That's all I have to offer - sorry I have nothing more. Best of luck to you. As for travel to Mayo, they have shuttles to and from Minneapolis and special services for patients and family members. PSC Partners had its last annual conference there and I looked up the travel details (didn't go, though). Looked like it would be pretty easy to get back and forth to the airport, etc.

Dana

Thanks, Dana, That is helpful! So far, Dr Fleckstein has been very accommodating, and I have a transplant eval. scheduled for 2 wk. from now.
EAD3

That sounds great, EAD3. I hope the two weeks fly by for you! So, a repeat ERCP and evaluation for transplant? Good luck with all of that. Dana

Hi Ben, Do you know anyone who has tried this medicine and works? Please inform.



BenY said:

Try vancomycin. My daughter has PSC and her blood reading is nearly normal now after starting vancomycin in late May. Read this http://stanmed.stanford.edu/2011spring/article6.html

My transplant doctor at Froedtert Hospital in Milwaukee put me on it to prevent bacterial infection in the small parts of the bile duct. I was being hospitalized about once every 6 weeks for liver failure brought on by bacterial infections. Vancomycin helped control the problem. It is a very expensive antibiotic and not every insurance plan covers it. In spite of the cost, it works.

Dear EAD3,

I haven't have that experience but plenty of people on this blog have been to Mayo, so I'm sure you'll find someone. I don't believe you mentioned anything about infections, so the Vancomycin may not be useful to you. It is expensive and they use it in some cases if they suspect MRSA.

Danabee

Good advice.

Mayo Clinic in Phoenix has been great. Mayo Clinic is at the forefront of PSC treatment. They concluded that my PSC diagnosis was not correct. My advise, don't settle for close to home. Over the past 30 years I have dealt with two bouts of cancer. I never settled for 2nd best doctors. If doctors couldn't answer my questions or didn't like being questioned., I dropped them like hot potatoes (there were multiple drops). Best of luck to you.