MD Anderson?

I'm going to be moving to Houston within 6 months. I know there are some folks on this site that are treated for VHL at MD Anderson.

Do I need to get a referral to see the docs there? And for those of you that are currently seen there, how do you like their care? I've heard it's one of the best treatment facilities out there... I would love to hear other people's stories who have been seen there!

Hope you all are having a wonderful day.

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Well, you are indeed going to one of the best places in the world to have VHL: Houston. Dr. Eric Jonasch is fantastic and he is very involved with the VHL carriers in particular. It is a VHL Clinical Care Center and has all the facilities and experience with VHL that a hospital could possibly have.

Rachel

PS. The International VHL Medical Symposium will be held in Houston Jan 26-29 2012, with the 29th being the family day. I will be going!
http://www.vhl.org/conf2012/index.php

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KansasGirl,

Rachel is right. I live in Dallas but drive to Houston to MDAnderson. They are at the top of their game. Dr. Jonasch is wonderful. Dr. Matin is who took my left kidney and his experience is top in our country.

Stay on top of things there, though. Anything administrative can be lacking. Communication is awful so you will be your best advocate. Don't be shy about calling or emailing until you get a response. Don't be shy about asking questions and if you ever have to have surgery, don't be shy about making sure the nurses at the hospital will take care of you. (Nurses at the clinic though are great.) I had a bad experience at the hospital after my surgery with things getting done and me being taken care of. However, I don't let anyone just forget or think its okay to not take care of me, so keep that in mind.

In the end, the doctors' experience and knowledge are superb and Dr. Jonasch and Dr. Matin are deep into research. I can't imagine working with anyone else.

The genetic counselors are wonderful, as well.

Good luck!

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Our boys were patients there for a few years and I agree with Jule. The administrative department can be very frustrating. I also had to be their advocate concerning what tests they needed and how often. They were patients in the Child and Adolescent Center. I found they wanted to do more ultra sounds rather than MRI's of their abdomens. We were later told at NIH that once tumors/cysts are seen, ultra sounds are no longer sufficient. Just don't be afraid to call, email and demand someone to call you back and answer questions. Also, know what you feel you need as far as testing and make sure they do not deviate from it. I am also planning on attending the Symposium....hope to meet some new friends there:).

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I guess it concerns me a little bit that their administrative department is lacking.... but I'm sure I can work with them somehow, I hope. Lol

I feel relieved though, hearing your responses about the doctors and their abilities. It is a little nerve-wracking for me having to switch doctors! I've gotten comfortable with these docs here at KU Med that I've been seeing for so long, and I've invested a lot of trust in them. Knowing that you all have received excellent care at MD Anderson helps put my mind at ease.

Thank you for your responses. :)

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M.D.Anderson Cancer Center, Houston, TX. Molly Daniels, M.S., Genetic Counselor, Tel: +1-713-745-7391. Their website is: http://www.mdanderson.org

Best of luck in Houston. Make sure to have copies of all your health records before you move for yourself. When you get set up at MD Anderson, they can request the records from your docs also.

Tina

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