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im worried
- By simo · Posted 7:41 am
- Discussion in How my diagnosis changed my life · 0 replies
- Hello, Please is it possible for someone to give me some informations about what is happening with me?So how i wrote before many days ago,Im 30 years old and I have VHL.First surgey in septeember 2005 ...
Hemangioblastoma nightmare
- By Jankster · New reply yesterday at 4:52 am
- Journal · 30 replies
- Earlier this year my husband was diagnosed with a benign brain tumor located on the brain stem about the size of a half dollar, which was removed. The neurologist told us all the risk, but said they were ...
Vhl Disability Status Question
- By Eug · New reply November 19, 2009
- Discussion in Financial and insurance issues · 5 replies
- Hi, Just wondering if anyone knows whether Vhl is now classified as a disability, whereby annual MRIs/CTs can be considered part of essential routine health checks. For people with diabetes, the medication ...
Need information
- By lety · New reply November 19, 2009
- Journal · 4 replies
- Hi My name is Letty I was diagnosed with VHL in 2002. I have been doing MRI of my head on a yearly basis because both my dad and sister have VHL and have had tumors in the head removed. I have recently ...
Unnecessary surgery- what can we do?
- By Heather31200 · New reply November 18, 2009
- Discussion in Health management issues · 6 replies
- We just found out the other day that the spinal cord surgery that my husband had this May was unnecessary. We went to a specialist in Boston for a second opinion. The Neurosurgeon stated that my husband's ...
Television exposure
- By eramsteven · New reply November 17, 2009
- Discussion in Getting a diagnosis · 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 ...
Pheochromocytoma or Paraganglioma?
- By joyceg98 · Posted November 17, 2009
- Journal · 0 replies
- Oxford Outcomes has asked us to post this notice. Oxford Outcomes is conducting a qualitative research study involving interviews with pheo/para patients in order to evaluate the clarity, relevance, and ...
VHL Warriors Please!
- By TinaDiane · New reply November 15, 2009
- Discussion in Finding emotional support · 1 reply
- I know this may be a sensitive subject, but I am going forth anyway. This website is for support with the disease VHL. Please, if you are struggling with a disease that is NOT VHL, please please find ...
Adreanal Insufficiency No More
- By VHLDNA · New reply November 15, 2009
- Discussion in How my diagnosis changed my life · 19 replies
- I had my bilateral adrenalectomy in 1986 and have been on hydrocortisone ever since. My current endocrinologist who I have been seeing for about one year has been concerned with the low dose I take. He ...
The beginning
- By sissy0513 · New reply November 15, 2009
- Journal · 15 replies
- Well, I was faced with having adrenal gland surgery and then found that I have tumors on both and will lose both, at 42 and a single mom this is distressing to me. I have a large amount of stress in my ...
FINALLY!
- By beccaloo · Posted November 14, 2009
- Discussion in Financial and insurance issues · 0 replies
- I finally had my day in court...and I WON!! The whole thing started back in Jan.2001, and it's FINALLY OVER and we can move on! I applied for soc.sec.dis. in 2003 and after 2 denials, 2 appeals and 6 ...
Wishing you a good outcome
- By MaryP · New reply November 12, 2009
- Journal · 8 replies
- Like many of you, I am a sandwich VHL patient. My mother had the disease, I have it, and my daughter also has VHL. After so many tumors, and so many surgeries, I wondered if in some way I was "allowing ...
RENAL ANGIOLIPOMA ANYONE???....
- By sonia40 · New reply November 10, 2009
- Journal · 12 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 ...
Waiting
- By rocksea · New reply November 9, 2009
- Discussion in Finding emotional support · 5 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 ...
I ask you once again for your prayers.
- By Myway · New reply November 8, 2009
- Discussion 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 ...
Cyberknife brain surgery
- By Raeanne · New reply November 8, 2009
- Discussion in Health management issues · 27 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 ...
GOVERMENT RUN HEALTHCARE
- By Rick · New reply November 7, 2009
- Discussion 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 ...
vhl
- By ireland22 · New reply November 7, 2009
- 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 ...
Just getting started..
- By Nannysgirl28 · New reply November 5, 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 ...
Off we go again!!
- By BriannaB · New reply November 5, 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 ...
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The VHL Family Alliance Support Community connects patients, families, friends and caregivers for support and inspiration. The VHL Family Alliance Support Community is sponsored by the VHL Family Alliance in partnership with Inspire.