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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?
VHL???Maybe???
- By Porq · New reply yesterday at 1:54 pm
- 6 replies
- My son recently spent a month at Mayo Eugenio Litta Children's Hospital to stabilize his bp and lower his heart rate before they could take out his 3 pheos and both adrenals. During this time he was tested ...
Frustration and false starts
- By joyceg98 · Posted June 21, 2009
- 0 replies
- We are looking for frustrating stories about a delayed diagnosis of VHL, to help young doctors learn. Were you told it was something else, only to lose valuable time in identifying the real problem? I ...
haemangioblastoma in superior vermis - operation or radiosurgery?
- By RayLi · New reply June 7, 2009
- 1 reply
- I had an operation on cerebellar haemangioblastoma (35mm with cyst) in 2001 and an operation on kidney after that in Singapore. Then I was diagnosed as VHL. Now I am living in Canada. The recent MRI scan ...
Suspected of having VHL
- By kbien · New reply May 26, 2009
- 6 replies
- I was recently diagnosed with RCC. I will have a partial nephrectomy next Friday. During the past couple of weeks I have discovered that my grandmother and great-grandmother both had kidneys removed ...
Novalis Shaped Beam Radiation
- By Rick · New reply April 21, 2009
- 10 replies
- I have a tumor growing in my Sacral Canal (very bottom of the spine), it is till very small but there is very little room in the Sacral area for any expansion. Because of scar tissue from previous surgeries ...
Genealogy - Family History
- By Richard · New reply March 24, 2009
- 8 replies
- Hi, all. Haven't been on the site for a year or two as I get over my procedures. Both adrenal glands removed in their entirety because of pheos. Laser on tumours in both eyes. Waiting for an appointment ...
Has anyone else been diagnosed with VHL and Myasthenia Gravis?
- By _RSH- · New reply March 13, 2009
- 2 replies
- Hi Everyone, I was diagnosed with VHL when I was 13 years old I'm now 33 years old and have had three hemangioblastomas removed from the cerebellum, two from my spine (c3 & t12) and several in my eye's ...
Is it possible I have VHL?
- By footballer · New reply March 11, 2009
- 11 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 ...
Scuba diving after kidney surgery ??
- By Hermvr · New reply March 4, 2009
- 3 replies
- I have been dignosed with VHL in 1999. I took up scuba diving in 2006 and was declared fit by a Diving Medical examinor. In June last year, it was suggested by the VHL support group in South Africa that ...
Cerebellum tumor
- By westieslove · New reply February 23, 2009
- 1 reply
- I just got the results of my latest MRI. I have a 2.8 x1.6 x1.9 cm mass in my right cerebellum. I am new to Richmond Va so I am going to a neurosurgeon that my PCP recommended on Monday for a consult ...
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 ...
