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Active discussions
Television exposure
- By eramsteven · New reply 3:16 pm
- In Getting a diagnosis · 3 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 ...
Cyberknife brain surgery
- By Raeanne · New reply 2:41 pm
- In Health management issues · 26 replies
- Has anybody else experienced complications from cyberknife brain surgery? I had the procedure done in August of last year and unfortunately, I've become ill from radiation induced swelling of the tissue ...
vhl
- By ireland22 · New reply 8:49 am
- In Getting a diagnosis · 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 ...
GOVERMENT RUN HEALTHCARE
- By Rick · New reply November 5, 2009
- In Financial and insurance issues · 18 replies
- I was diagnosed with VHL in 1980 and have had a total of 23 tumors either removed with conventional surgery or otherwise taken care of (radiosurgery). I am wondering if anyone else out there is concerned ...
Avastin and Lucentis for retinal angiomas?
- By hope520 · New reply November 3, 2009
- In Health management issues · 14 replies
- I am a 33 year old female diagnosed with VHL in 1998. I have been treated for retinal angiomas since 1998. I have had cryotherapy, retinal detachment and ongoing laser surgeries. I would like to find ...
after virtrectomy surgery
- By pupa · New reply November 2, 2009
- In Medical treatments that worked for me · 2 replies
- 6 months after virtrectomy and all was going well, bingo, I started to experience floaters, the drs say that it could be membrane peelng and they will follow up but the floaters are how last year the ...
Waiting
- By rocksea · New reply November 2, 2009
- In Finding emotional support · 3 replies
- My mother was diagnoised with 2 brain tumors in June. She lost an eye to VHL in 1963 and is blind in the remaing eye. She has also lost one kidney and part of another to VHL. She is having major balancing ...
Update with a question....regarding central sleep apnea?
- By Myway · New reply November 1, 2009
- In Finding emotional support · 3 replies
- Just a quick update - first thank you for all your support and prayers, our son is making slow but steady progress. He is still in intensive care and is now breathing on his own during the day, but it ...
Has anyone had this done?
- By RubySue315 · New reply October 29, 2009
- In Getting a diagnosis · 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 ...
VHL and Livestrong
- By lifeandhope · New reply October 28, 2009
- In Fundraising and raising awareness · 5 replies
- Great news about Livestrong adding VHL to it's dropdown box of types of cancer!!! This is great exposure ...
Tumor growth in young children
- By BriannaB · New reply October 23, 2009
- In Parenting issues · 8 replies
- My husband has VHL and has had 4 Brain operations to remove them. We are awaiting test results on our two children. Because of it DNA testing it takes way longer then your standard blood test, so were ...
Stroke and VHL
- By Michele40 · New reply October 23, 2009
- In Finding emotional support · 1 reply
- I have recently been diagnosed with VHL. I have had two surgeries on my spine this year to remove hemangioblastomas. I still have three left on the spine that are assymptomatic and won't be removed unless ...
Thalidomide use for multiple spinal cord hemangioblastomas
- By Kberri310 · New reply October 23, 2009
- In Health management issues · 5 replies
- I'm looking for any information for thalidomide use in VHL spinal cord tumors. Recently it has been brought up by my 13 yr old son's Doctors at Dana-Farber Cancer Institute, Boston. He has already had ...
broad ligament tumors/cysts?
- By kimbre · New reply October 23, 2009
- In Health management issues · 1 reply
- Has anyone had experience with the broad ligament tumors or cysts that are associated with VHL ,though rarely? Just wondering what symptoms led to discovering them and how doctors usually find them? Thanks ...
First trip to NIH
- By Kiesharodriguez2001 · New reply October 22, 2009
- In Health management issues · 20 replies
- I have VHL and finally after 8 years or so of dealing with this disease, I have finally been invited to NIH. I now have a 4.5cm tumor on my remaining left kidney. My question is...can someone give me ...
What Mom Would/n't Have Done
- By beccaloo · Posted October 21, 2009
- In Parenting issues · 0 replies
- IDK if this is a parenting issue, per se, but it seemed to fit best... I was diagnosed in '01 and was able to pretty much follow the line of VHL through my family backward, from me to mom (and her brother ...
Pancreatic Cysts
- By Dave · New reply October 20, 2009
- In Getting a diagnosis · 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 ...
dizzyness after brain surgery
- By oddmanout · New reply October 20, 2009
- In Health management issues · 5 replies
- hi there, I had a cerebellar hemangioblastoma removed on the 29th june this year. i spent 4 days in hospital and then they sent me home with some paracetamol! i recovered fairly quickly from the surgery ...
Genetic myths
- By joyceg98 · New reply October 20, 2009
- In Finding emotional support · 18 replies
- I'm curious -- what family lore was in your family about how VHL was inherited, or where it began? - only affects boys - only affects girls depending on who had VHL in the family. But other things, too ...
Lung tumors
- By ballroomdancer · New reply October 20, 2009
- In Health management issues · 1 reply
- I am curious: 6 years ago when i was at NIH, i was diagnosed with so many tumors, including in the lungs (small ones). Over the years, i have been on top of all my scans (brain, spine, abdomen), but have ...
