Discuss your experiences with healthcare professionals. Help others ask the right questions when seeking help.
- By marie3 · June 25, 2008
- 4 replies
- Hello all. I went to a different type of a doctor today for a complete evaluation. He practices Traditional Chinese Medicine. I usually frequent a very reputable, teaching hospital here in Chicago. My ...
- By Ed-ColoradoSprings · May 29, 2008
- 11 replies
- Found out my son has a hemangioblastoma in the lower spine. Would like to know if anyone has worked with any doctor in Colorado familar with this specific problem. Thanks ...
- By starduster · May 28, 2008
- 9 replies
- I have a brother in law that has vhl and it has caused a tumor on his brain stem and would like to know where he might get treatment for it ...
- By beccaloo · January 21, 2008
- 13 replies
- the NIH tells you they can't help you or have any studies or protocols for you because that's been my experience which seems so very different from everyone else's. And there's my question in a nutshell ...
- By kimbre · January 15, 2008
- 0 replies
- This may be a longshot, but I wanted to see if anyone has had surgery for kidney tumors in the Seattle, WA area. I have met with two kidney surgeons, one at Virginia Mason, and one at University of Washington ...
- By kimbre · January 15, 2008
- 10 replies
- Hi, I am newly diagnosed with VHL having renal cell carcinoma. I have had 2 opinions from kidney surgeons here in Seattle, WA. I know that there is a Dr. Linehan at NIH that is the expert on this (for ...
- By Denise8 · November 19, 2007
- 2 replies
- Hi, my 78 year old father suffers from many ailments, but has been recently diagnosed with Pheochromocytoma. However, he lives in Punta Gorda Florida and we cannot find in the immediate area a doctor ...
- By pamathis · October 15, 2007
- 2 replies
- I am new to this website and fairly new to VHL, so I am needing all the help I can get right now! I am trying to decide between 2 grad schools, one in Charlotte, NC and the other in Knoxville, Tenn. One ...
- By jdk_79 · October 5, 2007
- 0 replies
- I recently moved to Austin, TX and am looking for a PCP/internist in the area who might have a clue about VHL. I know MD Anderson is in Houston, but I'd like to see a local doc for referrals and such ...
- By BrandyB · July 12, 2007
- 1 reply
- Hello, I have not yet found a doctor that will treat the cause and not the symptoms. I have been to may doctors. I have tested positive for a pheo on one test and others are pending. I am hoping that ...
- By vidya · June 8, 2007
- 1 reply
- my husband had brain tumor and operatd for three time, is there any resuce not for the surgery again in the future ...
- By alyssa06 · May 30, 2007
- 1 reply
- Wondering if anyone out there knows of a good doctor in the Wichita, KS area? Wouldn't be past going to Kansas City or Oklahoma City to find one familiar with VHL. Just diagnosed and looking for someone ...
- By Amyh · May 3, 2007
- 0 replies
- My husband Neal has VHL. We live in Jacksonville, Illinois. He is originally from Missouri and has always went to the doctor in Columbia or Kansas City. That is 3-5 hours for us to travel. This is becoming ...
- By Sleepy · April 14, 2007
- 5 replies
- I am new to this site and hope I am using it correctly. I am hoping to find someone who knows about headaches forming when lying down and disappearing when standing. I am a 54-year-old white male and ...
- By jdk_79 · March 19, 2007
- 5 replies
- Can anyone refer a doctor who knows about VHL located in Springfield, IL or anywhere in Central IL? Thanks. -Joe ...
- By Christol7 · February 18, 2007
- 6 replies
- I am doing a research paper for my masters course and I would like to have others points of views. I have had VHL for over 13 years and I live in a rural area that does not offer much for medical help ...
- By JennyBlue · February 13, 2007
- 1 reply
- I just want to encourage EVERYONE, no matter what diagnosis is to seek a second,third, fourth opinion. I have family history of VHL. From paternal grandfather, three of my father's siblings plus him ...
- By kali · January 1, 2007
- 2 replies
- My experience with health care officials is not good. But is anyone’s? I have become outspoken but what is one to do when you tell friends of your experience or you read other situations and they say ...
