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New discussions
vhl
- By ireland22 · Posted November 6, 2009
- 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 ...
Television exposure
- By eramsteven · Posted November 6, 2009
- In Getting a diagnosis · 6 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 ...
after virtrectomy surgery
- By pupa · Posted November 1, 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 ...
GOVERMENT RUN HEALTHCARE
- By Rick · Posted October 31, 2009
- In Financial and insurance issues · 19 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 ...
Update with a question....regarding central sleep apnea?
- By Myway · Posted October 30, 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 · Posted October 27, 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 ...
Tumor growth in young children
- By BriannaB · Posted October 21, 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 ...
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 ...
Avastin and Lucentis for retinal angiomas?
- By hope520 · Posted October 20, 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 ...
Lung tumors
- By ballroomdancer · Posted 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 ...
i want a baby
- By simo · Posted October 17, 2009
- In Finding emotional support · 7 replies
- Hello, My name is Simona and Im 30 years old.Im married of 2 years ago and...me and my husband we want very much a baby.Is it possible to have a baby if I have VHL?I did a surgery in 2005 to my head,in ...
Experiences dealing with pheo tumors and loss of adrenal glands
- By ballroomdancer · Posted October 15, 2009
- In Health management issues · 7 replies
- Has anyone had any symptoms as a result of losing one of their adrenal glands? Has anyone had any symptoms as a result of losing both adrenal glands and living on medication to replace the function of ...
WHAT ROLES DO MEDICATIONS PLAY IN TUMOR GROWTH
- By ballroomdancer · Posted October 15, 2009
- In Health management issues · 0 replies
- Looking for opinions on medications and concern for tumor growth in VHL: 1. Depression/anxiety medication? 2. Birthcontrol pills and/or hormone replacement for menopause? 3. Hormone medication to replace ...
I ask you once again for your prayers.
- By Myway · Posted October 14, 2009
- In Finding emotional support · 8 replies
- I haven't written now for some 10 weeks....how do I know? Because that is the length of time our son has been in intensive care since his surgery on the 4th August. This time the surgery was to remove ...
Looking for a second opinion
- By Heather31200 · Posted October 8, 2009
- In Health management issues · 7 replies
- My husband wasn't diagnosed with VHL until he was 15 (1995) and had to have tumors removed from his brain. He lost the sight in his right eye after several radiation and cryotherapy treatments thereafter ...
broad ligament tumors/cysts?
- By kimbre · Posted October 6, 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 ...
Thalidomide use for multiple spinal cord hemangioblastomas
- By Kberri310 · Posted October 6, 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 ...
Stroke and VHL
- By Michele40 · Posted October 6, 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 ...
Ovarian Cysts
- By shema1999 · Posted October 3, 2009
- In Getting a diagnosis · 4 replies
- Can ovarian cysts be part of VHL? What about ganglion cysts and cysts in the skin ...
Protocol on ZD6474
- By docswife · Posted October 2, 2009
- In Finding emotional support · 3 replies
- I was just at NIH last week and was asked to be on a protocol for those who have renal cell tumors. Is there anyone on this protocol thats has been on it awhile and has had side effects and what they ...
