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Welcome to Inspire!
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Journals
SRS for Spinal Tumors
- 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 ...
Going under the knife again, wish me luck!
- 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 ...
IS SCUBA DIVING BADFOR BRAIN/SPINALTUMOURS
- 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 ...
Farewell to Dr. Novick
- 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 ...
Alex Jay VHL Day, a worldwide fundraiser!!!!
- 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 ...
Hemangioblastoma nightmare
- By Jankster · Posted October 19, 2008
- 30 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 ...
More questions than answers.
- 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 ...
Amyloidosis Support Groups- Rheumatoid Arthritis
- 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 ...
Cha Cha Cha Changes....
- 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 ...
Life Ain't Always Beautiful...
- By MariaKaminski · Posted September 15, 2008
- 3 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 ...
The Symposium was wonderful!
- 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 ...
Developing Asthma After Intubation
- 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 ...
Privacy and control
- 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 ...
Cancer since age 4
- 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 ...
The Blog
- 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 ...
Two years ago today...
- By JennyBlue · Posted July 29, 2008
- 3 replies
- I opened my eyes and saw a bright pink light. "What is that?" I thought, unwitting that I had said it aloud.... A voice, "What do you see, hon?" Who's voice was this? Do I know this voice? "Who are you ...
Blood Pressure
- By chewbacca1965 · Posted July 28, 2008
- 4 replies
- Just seen my family doctor the 23rd, and found out that my blood pressure is higher then it was 3 months ago. It didn't dawn on me till today that they might have missed something on my abdominal scan ...
Life with VHL
- By Frupper · Posted July 27, 2008
- 1 reply
- 5 year ago my girlfrend had non-Hodgkin's Lymphoma. She was strong and she recovered after one year of chemotherapy. We tought that the worst is just behind us. But last year doctors found tumor in my ...
VHL Throax ?
- By magtwin2 · Posted July 19, 2008
- 8 replies
- I am a VHL Patient and have had several brain and eye, and Kidney surgeries for removal of tumors/cysts. I have had both kidneys removed and now on dialysis. I met with my transplant evaluation team during ...
This week's show - and VHLFA Orlando!
- By joyceg98 · Posted July 3, 2008
- 0 replies
- The guest on the Powerful Patient this week is a member of this support group. See if you can figure out who it is! It's a conversation about blogging, and the value of blogging in her life. The Orlando ...
