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Getting a diagnosis
Share your own experiences with getting to a diagnosis. What symptoms did you first experience? How can your own experience help others to get an earlier diagnosis?
Genetic Testing----I'm an A
- By jdwilli09 · New reply February 20, 2009
- 21 replies
- I just had a genetic sequencing done, blood drawn at USC Norris and then sent to Johns Hopkins. They say that with VHL that the mutation usually shows up as a G or a C and T is normal or something like ...
Booklet on Family History
- By joyceg98 · New reply January 29, 2009
- 1 reply
- One essential tool in getting a diagnosis is to understand the risk factors that run in your own family. VHL, of course, is one such issue. But nonetheless, EVERYONE carries between 5 and 10 potentially ...
PET Scans
- By rcscott65 · New reply January 19, 2009
- 6 replies
- Can a PET scan show that you have lung cancer when it is actually a VHL lesion? Is this possible ...
Lung Help
- By rcscott65 · New reply January 11, 2009
- 3 replies
- My mother was recently given a diagnosis of lung cancer for a 2.7 vascular lesion in her right lung. It is vascular and I have requested that she get tested for VHL. She has not been tested, but I have ...
Hemangioma tumors and/or meningeal cysts
- By roxielf56 · New reply December 12, 2008
- 21 replies
- I have recently been looking to rule out VHL in regard to my diagnosis. I have a hemangioblastoma tumors (retnal) that has been treated with cryotherapy recently. But the tumors found on my spine by my ...
How long between 1st and 2nd VHL related illness
- By KateInUK · New reply December 4, 2008
- 16 replies
- I had a HAB on the cerebellum 12 years ago and then told it could be VHL and should be screened. I was screened for a while. The DNA test has twice come out in the "don't know" and so have the tests on ...
Just Learning about VHL
- By NewtoVHL · New reply November 30, 2008
- 27 replies
- This past week has been a whirlwind. Tuesday went in to the ER for some severe abdominal cramping and fatigue. An Abdominal CT scan detected a mass on each kidney and a mass on the liver and some lesions ...
kidney tumors
- By batley · New reply November 20, 2008
- 5 replies
- hi all has anyone in england had key hole op to take a kidney tumor out , or anyone any where really , my brother has a 3,9cm tumor on kidney and was told possible key hole but i cant see it myself ...
Was I already tested
- By andypandy110 · New reply November 13, 2008
- 2 replies
- A month ago I had a hemangioblastoma removed from my spinal cord (L5). I've been told that because the tumor is so rear that it was sent to three different pathologist before they had a clear diagnosis ...
any one have hemangiomas in their lungs?
- By TinaDiane · New reply November 10, 2008
- 11 replies
- I have just learned I have "strange things" on my lungs. The radiologist said they looked like hemangiomas but this has not been reported in VHL. I have Type 2b. Has anyone else every had any lung problems ...
Should I be tested?
- By andypandy110 · New reply November 8, 2008
- 5 replies
- After an MRI revealed a tumor on my L5 (spinal cord) I immediately had it removed which was about a month ago. My surgeon was convinced that by the looks of the tumor that it was cancer but said we had ...
New here,Heres my Intro
- By Batsec · New reply November 2, 2008
- 1 reply
- Hi There everyone. I'll start with my mother: at about 17 she had to have a tumor removed from her brain, she became blind in her right eye after the op (this was almost a normal side efect back 1968 ...
NF or VHL -- any help out there?
- By dizzybee · New reply November 1, 2008
- 4 replies
- Hello all, new to this site. 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 ...
genetic testing
- By joan2 · New reply October 23, 2008
- 8 replies
- I need your opinion regarding genetic testing. A friend doctor told me that it is not a good idea to test your kids because once they are 18 years old nobody would insure them anymore. I have 2 girls ...
Ringing in my left ear and short term hearing loss
- By Rick · New reply October 14, 2008
- 9 replies
- Has anyone ever experienced ringing in the ear as a delayed afteraffect of Radiosurgery? Ringing in my ear developed a couple of weeks ago and I experienced hearing loss that lasted a couple of days or ...
New VHL ad
- By FranMott · Posted October 7, 2008
- 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 ...
brain tumors
- By batley · New reply October 4, 2008
- 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 ...
Ear Tumors, and New to all this!?!
- By heatherbacon · New reply October 3, 2008
- 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 ...
Spinal Symptoms??
- By Melbeth · New reply October 2, 2008
- 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 ...
kidney tumors
- By batley · New reply September 29, 2008
- 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 ...
