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Welcome to Inspire!
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Active discussions
Vhl Disability Status Question
- By Eug · New reply yesterday at 9:37 pm
- 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 ...
Unnecessary surgery- what can we do?
- By Heather31200 · New reply November 18, 2009
- 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
- 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 ...
VHL Warriors Please!
- By TinaDiane · New reply November 15, 2009
- 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
- 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 ...
FINALLY!
- By beccaloo · Posted November 14, 2009
- 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 ...
Waiting
- By rocksea · New reply November 9, 2009
- 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
- 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
- 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
- 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
- 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 ...
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 ...
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 ...
