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Finding a doctor
Discuss your experiences with healthcare professionals. Help others ask the right questions when seeking help.
Poster child for seeking a second opinion
- By JennyBlue · New reply October 14, 2009
- 3 replies
- 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 ...
da Vinci robotic system and other new toys
- By FranMott · New reply September 25, 2009
- 1 reply
- I recently came across a good article that I would like to share with everyone. While it is not specifically about VHL, it makes some very good points that we need to take into consideration when we might ...
VHL specialist
- By husker · New reply September 15, 2009
- 5 replies
- My sisters husband was recently diagnosed with VHL, tumor in the cerebellum. We are looking for a specialist in this area, and need one as soon as possible in the Omaha, Nebraska, or Kansas City area ...
NIH/Dr. Francis Collins' Town Meeting
- By AmyB753 · New reply September 14, 2009
- 2 replies
- I was fortunate to be able to attend the Town Hall Meeting for Constituent Organizations that was presented at NIH yesterday, by their new director, Dr. Francis Collins. It was not a lengthy talk on his ...
ELST in Chicago
- By joyceg98 · New reply September 9, 2009
- 7 replies
- We have a member who has just relocated to Chicago, and who is having trouble with what sounds like an endolymphatic sac tumor (in the inner ear). Can you suggest a specialist in the Chicago area who ...
Spinal cord hemangioblastoma
- By GardenDance · New reply August 2, 2009
- 26 replies
- I had surgery on my spinal cord (T5 & 6) last October. My surgeon had never seen a hemangioblastoma, and did not know how to remove it. I have now been told by two surgeons that this tumor must be removed ...
JP Drain and staples
- By blessedbe1985 · New reply July 28, 2009
- 2 replies
- My boyfriend Simon, some of you might know who he is, has just recently had surgery to remove 2 tumors from his right kidney at NIH. They sent him home with staples and a JP drain and asked that we get ...
Proper Leader of Treatment Team for Patient with Brain Tumors/Seizures
- By lgsdaughter · New reply June 28, 2009
- 11 replies
- Hello everyone. I'm new here and this is my first post. I'm the daughter of a 67 year old woman with VHL. It seems that her symptoms, mainly seizures, are getting worse. At the beginning of the year she ...
Dr. Oldfield
- By westieslove · New reply June 20, 2009
- 12 replies
- I was wondering if any of you have had brain surgery with Dr. Ed. Oldfield. I am going to see him soon as I have a hemangiomablastoma on my right cerebellar. I have been reading some of the on line ratings ...
Son born with no eyes
- By ericmab · New reply June 19, 2009
- 6 replies
- My first child was born on May 4, 2009 with a rare genetic condition known as Fraser's Syndrome. His eyes are covered by skin and, according to our surgeon, the MRI's suggest that his globes are useless ...
San Diego VHL Doctors
- By bnewbegin · New reply June 12, 2009
- 20 replies
- I just moved to San Diego, and I'd like to build a list of doctors in SoCal with VHL experience. Please reply with your VHL related doctor recommendations in Southern California. Thanks, Brian Newbegin ...
"Letting the Patient Call the Shots"
- By FranMott · New reply June 8, 2009
- 2 replies
- The New York Times had an article in it by Pauline W. Chen, MD (published June 4, 2009) titled: "Letting the Patient Call the Shots". It centers around an interview with a Harvard pediatrician, Dr. Berwick ...
Moving to Denver with VHL
- By n8writer · New reply June 5, 2009
- 6 replies
- First-time poster here .. I'm going to be relocating from Detroit to Denver in the next few months, and while I've been lucky enough to have a clinical care center here, I know there isn't one in Colroad ...
JOYCE
- By Rick · New reply May 7, 2009
- 3 replies
- Hello Joyce, I would like to send copies of my scans to the University of Pittsburg or Lunsford @ NIH for a second opinion. Lahey clinic is looking @ performing Shaped Beam Radiosurgery on a tumor in ...
Referral Question
- By plischeske · New reply April 23, 2009
- 1 reply
- On December 17th, 2007 I underwent surgery at UCSF in which they removed a pretty big hemangiomablastoma from my cerrabellum. Another Surgeon had tried to remove it back in 1994, but was worried about ...
Pediatrics in Orange County,CA
- By nansyeri · New reply April 7, 2009
- 1 reply
- My babies have VHL and I would like to know if anyone knows a Pediatrician in Orange County, CA that is familiar with this disease so I can switch my current one ...
Toronto here I come
- By MelanieT · New reply March 23, 2009
- 1 reply
- Hello all, it's Melanie. I thought I would just dropping a line. I am on my way to Toronto Tues March 24 to see Dr.Kertes,A retinal Specialist that specializes in diseases of the retina. Over the last ...
vHL Pancreas Tumors
- By stevenl · New reply February 28, 2009
- 3 replies
- All, I want to thank everyone for their patience as I have relocated my efforts to Albert Einstein College of Medicine and Montefiore Medical Center in New York. I am excited to welcome any of my current ...
Looking for pediatric vascular neurosurgeon
- By Kberri310 · New reply October 30, 2008
- 2 replies
- I'm hoping for some help. My 12 yr old has VHL with multipal spinal cord hemangioblastomas. I'm very confused and overwhelmed with researching for the best vascular neurosurgeon to guide us. We live in ...
Need a New VHL Doctor in Doylestown Pa Area
- By StillKickin · New reply October 3, 2008
- 2 replies
- Hello everyone, I am looking for a New VHL Doctor in Doylestown Pa Area. Just moved here. I am seeing Dr. Shipkin (Neurologist) who has had experience with VHL, but I need a Dr. to see on a regular basis ...
