New journals
- By dizzybee · Posted November 19, 2008
- 10 replies
- I finally got an appt with a geneticist on 1/13. This is just a meeting to see if I need genetic testing, but at least it's a start ...
- By dizzybee · Posted November 14, 2008
- 6 replies
- Has anyone had a PET & CT with contrast and radioactive tracer and felt sick afterwards? I had one done on 10/24 and every since then I've been very weak, nauseous and just don't feel well. I thought ...
- By dizzybee · Posted November 11, 2008
- 8 replies
- to all of you with your words of encouragement, advice, ideas, etc. Thanks to Gail at VHL for calling people for me. Hopefully, (fingers crossed) I will going to a genetics counselor at Shands in Gainesville ...
- By Rick · Posted November 10, 2008
- 5 replies
- Just wantedd to share this. I found two hospitals in NY that have performed SRS on spinal tumors. Westchester Medical Center, Valhalla, NY and Mount Sinai Medical Center, NY,NY. I do not beleive they ...
- By dizzybee · Posted November 9, 2008
- 5 replies
- As you may have read, I have dysautonomia which is a dysfunction of your autonomic system (everything in your body that works without you thinking about it, brain, heart, breathing, bp, bowels, kidneys ...
- By dizzybee · Posted November 9, 2008
- 3 replies
- I am a 45 yo white female, my mother was almost 35 when I was born and she smoked throughout her pregnancy. My brother had mumps and german measles, which my mother exposed me to, but I never got. I had ...
- By StillKickin · Posted October 31, 2008
- 5 replies
- Thanks for the past support during my multiple surgeries, but I’m asking again for your best wishes and priers. Mostly for my fiancé. To give her the strength to deal with this again for the fourth time ...
- By Crazydog · Posted October 22, 2008
- 4 replies
- My son is on holiday at the moment and has been scuba diving. He ended up with a burst ear drum (he has had problems with his right ear) but he also had awful pain in his neck and head. He at present ...
- By joyceg98 · Posted October 22, 2008
- 3 replies
- I am sad to report that Dr. Andrew Novick died last weekend. Dr. Novick was a member of the Medical Advisory Board of the VHLFA, and a world-renowned urological surgeon. He pioneered partial nephrectomy ...
- By AlexAnderson · Posted October 21, 2008
- 14 replies
- Hey, Alex Jay Anderson here! You know me as Cancerkid777. Those of you reading this, I need your help. As you read this, a great thing is in the making. Alex Jay VHL Day!!! Now, I don't know the details ...
- By Jankster · Posted October 19, 2008
- 18 replies
- Earlier this year my husband was diagnosed with a benign brain tumor located on the brain stem about the size of a half dollar, which was removed. The neurologist told us all the risk, but said they were ...
- By RosemarieB · Posted October 18, 2008
- 2 replies
- While sitting at home, recovering from surgery, I keep wondering why no one has come up with a man made protein that persons with VHL can take. They know the gene that produces the tumor suppressing protein ...
- By Muriel · Posted September 25, 2008
- 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 MariaKaminski · Posted September 23, 2008
- 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 MariaKaminski · Posted September 15, 2008
- 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 joyceg98 · Posted September 10, 2008
- 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
- 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 Brian · Posted August 27, 2008
- 48 replies
- At Inspire, we think about privacy all the time. Virtually every web site has a privacy policy; you can read ours here: http://www.inspire.com/about/privacy/. But simply following the letter of a privacy ...
- By AlexAnderson · Posted August 20, 2008
- 6 replies
- Hey, I'm Cancerkid (Actualy, It's Alex) And I'm one of the youngest ever diegnosed with VHL. That's me in the top corner on the homepage! I have a very rough story, too. At age 4 I was unable to hear ...
- By Beverly2 · Posted August 9, 2008
- 0 replies
- I've been writing fairly often already about our journey with vhl. Go to http://stevensjourney.blogspot.com. It's all there ...
