VHL Family Alliance Support Community

The VHL Family Alliance Support Community connects patients, families, friends and caregivers for support and inspiration... More about this group

Whipple

By VALPO · New reply 5:17 pm
Discussion in Tips for caregivers · 8 replies
My 16 year old granddaughter will have a whipple within the next few weeks after a biopsy is done. I know it will be a complicated surgery. I would appreciate any input on what to expect right after the ...

Infertile

By ajackson1227 · New reply 5:54 am
Discussion in Parenting issues · 3 replies
My husband and I recently found out that he is azoospermic in a condition urelated to VHL. We have been completely devastated by the news, and are looking for answers. It has been diagnosed as primary ...

Five million

By Brian · New reply yesterday at 8:08 pm
Journal · 243 replies
Dear members, Yesterday, Inspire reached a milestone: five million posts written by members! Each of these posts, and the 700 million words they contain, are a simple measure of how much we all do to ...

Hey Every Body r u Remembered me !!!??

By Doaa · New reply yesterday at 9:30 am
Discussion in Finding emotional support · 2 replies
As your Positive Energy Joyce which u give it to me to how much important to do MRI I already Do it and I`ll go today to receive the result I`m so scare and think about the result too much Really I`m ...

PNET question

By 4728lisa · New reply June 15, 2013
Journal · 50 replies
Hi all. How do doc's determine if a PNET is "functioning" or not?? I had a biopsy done in Nov. at the Mayo to diagnosis a tumor in my pancreas. Sadly, I developed pancreatitis and was hospitalized and ...

One year later

By DMCT · New reply June 14, 2013
Journal · 1 reply
One year ago today I woke up in the morning to get dressed to leave for the hospital . I was so scared, I saw Mike was watching me so I just pressed on.(I'm sure it wasn't easy to watch)the closer we ...

Avastin for spine tumor???

By MrsTreloar · New reply June 13, 2013
Discussion in Health management issues · 13 replies
My husband's spine tumor proved to be inoperable (all function below the belly button would have been lost is the tumor were to be removed). His spinal cord has enveloped the hemangioblastoma. We were ...

June 10, 2013

By embalmer23 · New reply June 12, 2013
Journal · 4 replies
I used to write a journal when I was younger so it feels kind of weird to start up again, but I think this will help me control/express my emotions better. I go to see my neurosurgeon Friday, June 28th ...

staying strong for family with out losing my own strength to fight vhl

By Terrence · New reply June 12, 2013
Discussion in Finding emotional support · 4 replies
I am the eldest male out a family of five my mother died 8years ago from vhl I was just diagnosed with vhl and I have tumors through out my whole body my oldest sister was diagnosed a year earlier then ...

coming to stay in canada from scotland with VHL

By linz · New reply June 12, 2013
Discussion in Finding a doctor · 9 replies
hi i realy hope somebody can help me with this, i am scottish but my partner has a job in canada in which our family will be coming out to stay in canada but myself and 2 kids have VHL. in the uk we get ...

Tumor Imbedded in Spinal Cord

By MrsTreloar · New reply June 11, 2013
Discussion in Finding emotional support · 1 reply
Hello, About 7 weeks ago Dr.Martin at UCLA attempted to remove a tumor from my husband's spinal cord - right behind his belly button (I forget the T/L numbers). My husband is blind (hemangioblastomas ...

VHL

By Gregg1022 · Posted June 11, 2013
Discussion in Finding a doctor · 0 replies
My son is currently under Dr. Asthagiri care at NIH. We've been with him for about a month and my son need surgery to remove a hemangioblastoma from his cervical spine. Has anyone been under his care ...

VHL Kidney Tumor Growth Rate?

By Nelsonb · New reply June 9, 2013
Discussion in Getting a diagnosis · 25 replies
How fast can a VHL kidney tumor grow? Here’s why I ask. When I discovered that I had VHL in 1995, tumors abounded in both kidneys. The right kidney, the size of a softball, was completely removed in 1996 ...

Interested in what u said Lyndon..u there still?

By skeetelmore65 · New reply June 8, 2013
Discussion in Getting a diagnosis · 1 reply
Lyndon...u still there? U posted this back in July 31, 2009 at 12:41 pm and I am experiencing the same electrical pain down my left arm and leg...like u were. I had a C5-C6 diskectomy back in Feb.'06 ...

My son has VHL

By Gregg1022 · New reply June 8, 2013
Discussion in How my diagnosis changed my life · 10 replies
My son Justin is 18 in his senior year of high school and is a baseball player. I just received the results of genetic testing and it's confirmed he has VHL. February 1st he woke up with a bad headache ...

VHL brain tumors near the clivus?

By Nelsonb · New reply June 8, 2013
Discussion in Getting a diagnosis · 8 replies
One of my doctor team just called me up to discuss “a tiny something” that showed up in my brain MRI of May 13, 2013. She said it took this long to tell me because there have been several discussions ...

Hello everyone :)

By embalmer23 · New reply June 6, 2013
Discussion in Finding emotional support · 11 replies
Good Afternoon everyone, My name is Emily and I celebrated my 23rd birthday this January with brain surgery. WOO! Talk about an interesting start to the year. :/ I graduated last year from Mortuary School ...

Emotional and Cognitive Changes after Multiple Craniotomies

By nancyetdidier · New reply June 6, 2013
Discussion in Tips for caregivers · 3 replies
My husband, 59, was first diagnosed with VHL when he was 14, and until recently he has lived a very full and active life. But since 2011, he has had four surgeries to remove multiple tumors from his cerebellum ...

Pancreatic Duct Surgery

By Christine29 · New reply June 6, 2013
Discussion in Health management issues · 8 replies
I had 2 ERCP's where they tried to remove stones stuck in my pancreatic duct, which is causing my daily chronic pancreatitis. Both were unsuccessful. Now, my surgeon wants to do a surgery where he'll ...

I`m satarting lost my mind

By Doaa · New reply May 29, 2013
Discussion in Finding emotional support · 10 replies
Hi every body I`m Doaa from Egypt and I`m 29 years old About a year ago newly married for the second time and became pregnant in the first months of marriage and get newly delivery in the sixth month ...

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The VHL Family Alliance Support Community connects patients, families, friends and caregivers for support and inspiration. This community is sponsored by the VHL Family Alliance, an Inspire trusted partner.