New
- By FranMott · Posted yesterday at 10:38 am
- Discussion in Getting a diagnosis · 0 replies
- The VHL Family Alliance has an ad appearing in USA Today Magazine. It's out now. It's great! It can be found on page 21 E. We're excited! Please take a look. -Pass it around. It's another way we're working ...
- By heatherbacon · Posted October 2, 2008
- Discussion in Getting a diagnosis · 1 reply
- It all started with the ear tumor, paraganglioma is what my Doctor said about 8 years ago. After 3 surgeries on my right ear, two surgeries on my neck to get rid of caroid body tumors,and a recent adrenal ...
- By StillKickin · Posted October 2, 2008
- Discussion in Finding a doctor · 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 ...
- By Myway · Posted October 2, 2008
- Discussion in Health management issues · 5 replies
- As promised I said that I would let you know what questions we asked and their answers - as best I can. First, we spoke to my son's oncology consultant as he has carried out the two SRS treatments for ...
- By batley · Posted October 1, 2008
- Discussion in Getting a diagnosis · 3 replies
- hi all does anyone know about enfefalightus, sorry i know i spelt that very wrong , its where the fuild is bein blocked from the brain and its infected, my brother has been very poorly with this he has ...
- By batley · Posted September 28, 2008
- Discussion in Health management issues · 6 replies
- hi ive read some stuff on eye tumors by the opic nerve, now ive had one there for 6 yrs and its been ok untill now , just been told its got slightly bigger , ive always been told that i should never have ...
- By Muriel · Posted September 25, 2008
- Journal · 0 replies
- Received this last night... It has taken five years to go from committee to an actual floor vote, but it is actually scheduled to be voted upon....this Thursday. This is critically important legislation ...
- By Cancerkid777 · Posted September 25, 2008
- Discussion in Kids and teens · 1 reply
- Hey, Cancerkid here. You know my lemonade stands that I told you about? Well I have another 9 in may!! My friends in school are sooooooooo great! Instead of one lemonade stand, I had so many volonteers ...
- By batley · Posted September 24, 2008
- Discussion in Parenting issues · 0 replies
- ive read some things on here about people bein tested for vhl and it commin back no vhl but they do have it , im confused , i have vhl and my daughter my son come back with a no but do i really beleave ...
- By batley · Posted September 24, 2008
- Discussion in Getting a diagnosis · 7 replies
- can anyone tell me what is the size of a kidney tumor can go to befor it should come out , my brother has one at 3cm .9 he been told ...
- By beccaloo · Posted September 24, 2008
- Discussion in Getting a diagnosis · 2 replies
- I've been diagnosed w/VHL for about 6 yrs. now and am, what I like to call "Circling the Airport" status. This means right now we're waiting and monitoring. I get my kidneys, pancreas, and brain + spinal ...
- By gale · Posted September 23, 2008
- Discussion in Finding emotional support · 8 replies
- The VHF Family Alliance is now active with Webinars. You will need your telephone and an Internet connection to participate. To register, go to http://vhl.org/support/webinar.php. If you have already ...
- By MariaKaminski · Posted September 23, 2008
- Journal · 0 replies
- Life happens, and life changes. Sometimes too quickly. Looking back I never thought I'd be in this place at this time with this life. But some things are good and some things are not so good, but everything ...
- By amykate · Posted September 18, 2008
- Discussion in Finding emotional support · 12 replies
- I was diagnosed with VHL last October after discovering that I had a rather large endolymphatic sac tumor in my left ear. I had that removed in January. I currently have a tumor in my cerebellum and a ...
- By Melbeth · Posted September 16, 2008
- Discussion in Getting a diagnosis · 9 replies
- I was just wondering how different people's spinal tumors or cysts first began to present themselves. I've been having some neck and lower back pain, but don't want to jump to any conclusions. I'm also ...
- By MariaKaminski · Posted September 15, 2008
- Journal · 2 replies
- Oh is crying time again... Current mood: lonely Category: sad Life Life is hard. Who ever said it wasn't didn't really live. These days I take one step forward and two steps back. I'm slowly getting back ...
- By gale · Posted September 11, 2008
- Discussion in Health management issues · 0 replies
- By: Dr Weil Try the Alexander Technique for Back Pain A new British study has confirmed that the Alexander technique, a type of body work that focuses on improving posture, in combination with a brisk ...
- By joyceg98 · Posted September 10, 2008
- Journal · 0 replies
- I just got back from the Eighth International Medical Symposium on Von Hippel-Lindau in Denmark. I have posted some early photos to share some of the excitement. The report will be going up in the next ...
- By jmathison · Posted September 10, 2008
- Journal · 3 replies
- I underwent a lobectomy because of a sizable VHL tumor in the mid portion of my lung. Both surgery and recovery went well. And then a few weeks later I developed asthma. I assumed irritation to the lung ...
- By TJ7334 · Posted September 4, 2008
- Discussion in Medical treatments that worked for me · 8 replies
- What has been suggested for VHL patients with neuropathic pain, especially related to spinal tumors? What has worked and what hasn't? Does anyone have comments on the Laser Spine Institute in Tampa? They ...
