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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?
Television exposure
- By eramsteven · New reply November 17, 2009
- 9 replies
- Just to let you know that VHL was mentioned on the ABC show, Private Practice last night. It had to do with preimplantation genetic testing of embryos with dwarfism. The doctor wouldn't implant becuase ...
vhl
- By ireland22 · New reply November 7, 2009
- 1 reply
- Hi all, well i have been toald that i have a tumor in my inner ear ( ELST) but the tumor is leaning up on my facial nerve and the right side of my face has drooped a little , what id like to find out ...
Has anyone had this done?
- By RubySue315 · New reply October 29, 2009
- 2 replies
- My daughter found out she had VHL in 2004.She had part of her pancreas rmoved in Jan.2006. In Oct.2006 she had Brain surgery for a malignant tumor.Now the cancer has gone to her liver. They want to do ...
Pancreatic Cysts
- By Dave · New reply October 20, 2009
- 5 replies
- Just got word back from my primary care physician that my most recent abdominal scan shows a 3.5cm cyst on my pancreas. Last year, when Dr. Libutti at NIH looked at the cyst, it was between 1.5cm and ...
Ovarian Cysts
- By shema1999 · New reply October 8, 2009
- 4 replies
- Can ovarian cysts be part of VHL? What about ganglion cysts and cysts in the skin ...
deep cerebellum tumor surgery
- By karenga01 · New reply October 7, 2009
- 8 replies
- Has anyoneone on this board had a hemangioblastoma removed from the deep (middle) of the cerebellum? I wanted to find out about the side effects. I had one removed on 10/03/07 and am having trouble with ...
Tumors/cysts in the liver
- By ballroomdancer · New reply September 11, 2009
- 8 replies
- I have multiple cysts in my liver. I am also on the birthcontrol pill which can cause cysts in the liver. How do i know if the liver cysts/tumors are caused from VHL or the birth control pill. Should ...
Frustration and false starts
- By joyceg98 · New reply September 5, 2009
- 11 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 ...
Want Opinions
- By malpal · New reply August 14, 2009
- 12 replies
- My daughter is 16. Her health has been going downhill now for several years. This past week, she developed pain in her left side of her abdomen that spreads to her back.... She has been nauseated, and ...
child with crohn's symptoms- could it be VHL?
- By kimbre · New reply August 1, 2009
- 4 replies
- Hi, I have VHL and my little niece in North Carolina is having a terrible time right now. She is losing weight rapidly, can barely eat, and when she does it has to be a baked potato or something very ...
VHL???Maybe???
- By Porq · New reply July 18, 2009
- 7 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 ...
vhl or something else
- By katmine · New reply July 13, 2009
- 6 replies
- I was diagnosed with vhl almost four years ago. No one else in my family has been diagnosed with vhl. One of my brothers has been pretty sick lately and I'm wondering if he might have vhl. He had pancreatic ...
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 ...
