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vhl
- By ireland22 · Posted yesterday at 4:48 pm
- Discussion 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 yesterday at 1:03 pm
- Discussion in Getting a diagnosis · 1 reply
- 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 ...
14 YRS SINCE MY BROTHER PASSED AWAY...
- By sonia40 · Posted November 3, 2009
- Journal · 13 replies
- Hello all the wonderful ladies and gents on this wonderful site.... Today is a sad day for me....today is my brothers anniversary....he passed away exactly 14yrs ago of pacreatic cancer..he was only 28yrs ...
no new nasties
- By diaryofageneticdefec · Posted November 3, 2009
- Journal · 3 replies
- Just wanted to share the good news that my annual review said, that i can come back in a year. whoo hoo ...
Just getting started..
- By Nannysgirl28 · Posted November 2, 2009
- Journal · 1 reply
- We are now in what you would call the "down period" of my grandmother's chemo treatments. She is actually taking them very well. Getting around on her own and eating well. We begin 3 more chemo treatments ...
after virtrectomy surgery
- By pupa · Posted November 1, 2009
- Discussion 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
- Discussion 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 ...
Update with a question....regarding central sleep apnea?
- By Myway · Posted October 30, 2009
- Discussion 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 ...
Off we go again!!
- By BriannaB · Posted October 29, 2009
- Journal · 3 replies
- We just got back from my husbands appointment with the neurosurgeon, and yes he is going to have another brain surgery sometime within the next 6 months... he wants it to get a little bigger. Anyways ...
Inspire members featured
- By Brian · Posted October 28, 2009
- Journal · 29 replies
- Today Massachusetts General Hospital's Proto Magazine published a wonderful profile of nine Inspire members. Each of these stories underscores what we all know to be true -- that Inspire is a special ...
Has anyone had this done?
- By RubySue315 · Posted October 27, 2009
- Discussion 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 ...
RENAL ANGIOLIPOMA ANYONE???....
- By sonia40 · Posted October 26, 2009
- Journal · 10 replies
- Hello everyone..... as you all know me for those people who are following my posts....i have been told that i have a 5cm Renal angiolipoma on my right kidney....(have not had a biopsy as yet)...i also ...
A CYST ON MY OVARY....
- By sonia40 · Posted October 24, 2009
- Journal · 13 replies
- Hello everybody.... for those wonderful people who are keeping up with my posts...(LOL)...im just wondering if anyone can claryify this confusing situation....i was diagnosed with CIN1/HPV...so back in ...
HOPE ANYONE CAN HELP ME...
- By sonia40 · Posted October 23, 2009
- Journal · 8 replies
- Hello all once again as i mentioned before i am scheduled for my app in december..(re partial nephrectomy)....i just have a few symptoms that im dealing with and thought which better place to ask than ...
Positive for VHL
- By BriannaB · Posted October 22, 2009
- Journal · 2 replies
- Right now in my family we have 5 kids that had to be tested for the VHL disease. So far 3 have come back. 2 are free and clear, but today we found out my neice is potitive for VHL. We are still awaiting ...
FINALLY GOT AN APP WITH A HOSPITAL....
- By sonia40 · Posted October 21, 2009
- Journal · 10 replies
- Hello all i am soooo excited i just had to let everyone know the wonderful news...today i received a letter from 1 of the hospitals that i was on the waiting list regarding my kidney tumor....i have an ...
Tumor growth in young children
- By BriannaB · Posted October 21, 2009
- Discussion 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
- Discussion 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 ...
DCLG meeting
- By joyceg98 · Posted October 20, 2009
- Journal · 0 replies
- I'm back from Europe, now in Washington at the NCI Director's Consumer Liaison Group meeting (DCLG) -- NCI is the National Cancer Institute (US). The meetings are open, and are being webcast if you are ...
Avastin and Lucentis for retinal angiomas?
- By hope520 · Posted October 20, 2009
- Discussion 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 ...
