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?
- 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 ...
- By KateInUK · New reply November 20, 2008
- 15 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 ...
- By roxielf56 · New reply November 13, 2008
- 5 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 ...
- 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 ...
- By NewtoVHL · New reply November 11, 2008
- 26 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 ...
- 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 ...
- 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 ...
- 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 ...
- 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 ...
- 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 ...
- 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 ...
- By footballer · New reply October 13, 2008
- 9 replies
- Hi I am a 20 year old male and I was just recently diagnosed as having the VHL gene through genetic testing. Many of my family members on my mothers side have the disease and have had symptoms, including ...
- 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 ...
- 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 ...
- 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 ...
- 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 ...
- 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 ...
- By beccaloo · New reply September 25, 2008
- 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 jdwilli09 · New reply September 24, 2008
- 20 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 ...
- By Dig62 · New reply September 7, 2008
- 13 replies
- Hi all, Long time since I posted. Quick review of my history: I had clear cell renal carcinoma (right kidney) at a young age (37). Then last summer during routine CT scan they found a nodule on my left ...
