Join now

Already a member? Sign in

Welcome to Inspire!

What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.

Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.

How - Joining Inspire is completely free and usually takes less than a minute. Join now!

corner corner corner

Finding a doctor

Discuss your experiences with healthcare professionals. Help others ask the right questions when seeking help.

seen by NIH

kimbre
  • By kimbre · New reply June 28, 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 ...

Phacomatosis

marie3
  • By marie3 · New reply 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 ...

Spinal Hemangioblastoma - Colorado Springs, CO

Ed-ColoradoSprings
  • By Ed-ColoradoSprings · New reply June 23, 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 ...

where do i get treatment for vhl tumor on brain stem

starduster
  • By starduster · New reply June 3, 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 ...

NIH: Don't be surprised if...

beccaloo
  • By beccaloo · New reply January 29, 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 ...

choosing the best surgeon for kidney tumors

kimbre
  • By kimbre · Posted 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 ...

Looking for a Pheochromocytoma Surgeon in FL

Denise8
  • By Denise8 · New reply December 13, 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 ...

Charlotte, North Carolina or Knoxville, Tennessee

pamathis
  • By pamathis · New reply October 17, 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 ...

Austin, TX

jdk_79
  • By jdk_79 · Posted 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 ...

Denver Doctors

BrandyB
  • By BrandyB · New reply August 29, 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 ...

VHL

vidya
  • By vidya · New reply June 9, 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 ...

Finding a doctor in Wichita, KS area

alyssa06
  • By alyssa06 · New reply June 3, 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 ...

finding a doctor in St. Louis area

Amyh
  • By Amyh · Posted 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 ...

Pheo-like Symptoms

Sleepy
  • By Sleepy · New reply April 28, 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 ...

Springfield, IL

jdk_79
  • By jdk_79 · New reply April 3, 2007
  • 5 replies
  • Can anyone refer a doctor who knows about VHL located in Springfield, IL or anywhere in Central IL? Thanks. -Joe ...

Finding Doctor for Rare Disorders

Christol7
  • By Christol7 · New reply February 23, 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 ...

Will need the rest of my life to tell all

kali
  • By kali · New reply January 2, 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 ...

Group leaders

You