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Yeah!!! -- a little good news.....

dizzybee
  • By dizzybee · New reply 11:36 am
  • Journal · 10 replies
  • I finally got an appt with a geneticist on 1/13. This is just a meeting to see if I need genetic testing, but at least it's a start ...

kidney tumors

batley
  • By batley · New reply yesterday at 1:15 pm
  • Discussion in Getting a diagnosis · 5 replies
  • hi all has anyone in england had key hole op to take a kidney tumor out , or anyone any where really , my brother has a 3,9cm tumor on kidney and was told possible key hole but i cant see it myself ...

How long between 1st and 2nd VHL related illness

KateInUK
  • By KateInUK · New reply yesterday at 11:13 am
  • Discussion in Getting a diagnosis · 15 replies
  • I had a HAB on the cerebellum 12 years ago and then told it could be VHL and should be screened. I was screened for a while. The DNA test has twice come out in the "don't know" and so have the tests on ...

New feature: video!

Brian
  • By Brian · New reply yesterday at 10:36 am
  • Journal · 19 replies
  • I am pleased to announce that we have updated Inspire to support video. You can now share a video of yourself, videos that you find inspirational or informative, and more. I've included one of myself ...

PET/CT Scans

dizzybee
  • By dizzybee · New reply November 19, 2008
  • Journal · 6 replies
  • Has anyone had a PET & CT with contrast and radioactive tracer and felt sick afterwards? I had one done on 10/24 and every since then I've been very weak, nauseous and just don't feel well. I thought ...

Type of VHL

Beverly2
  • By Beverly2 · New reply November 19, 2008
  • Discussion in Health management issues · 11 replies
  • I've seen many people referring to type 2B in the discussions lately, and I was just wondering how you know that you have type 2B. When we were given Steven's genetics results, no mention was made of ...

This is relentless.....

Myway
  • By Myway · New reply November 19, 2008
  • Discussion in Finding emotional support · 12 replies
  • I have been posting about SRS for spinal tumours recently, and my son after having a tumour removed from his spine was about to start a 6 week course of radiotherapy to treat a larger tumour that is embedded ...

Tribute

gale
  • By gale · New reply November 17, 2008
  • Discussion in Finding emotional support · 2 replies
  • Did everyone see the tribute we did for Joyce Graff at the Orlando conference? It was the 15th anniversary of the VHL Family Alliance. We have come a long way. Between you and me, Joyce was choked up ...

Why are we here?

Brian
  • By Brian · New reply November 16, 2008
  • Journal · 124 replies
  • When we started this community, each of us faced important health issues in our lives. Some of us have family members with medical conditions. Many of us have medical conditions of our own. All of us ...

SRS for Spinal Tumors

Rick
  • By Rick · New reply November 14, 2008
  • Journal · 5 replies
  • Just wantedd to share this. I found two hospitals in NY that have performed SRS on spinal tumors. Westchester Medical Center, Valhalla, NY and Mount Sinai Medical Center, NY,NY. I do not beleive they ...

Many thanks!!

dizzybee
  • By dizzybee · New reply November 14, 2008
  • Journal · 8 replies
  • to all of you with your words of encouragement, advice, ideas, etc. Thanks to Gail at VHL for calling people for me. Hopefully, (fingers crossed) I will going to a genetics counselor at Shands in Gainesville ...

Any Info on combination of kidney and spine Chemo Drugs

StillKickin

Spinal hemangioblastomas located along the nerve root

AEckerman
  • By AEckerman · New reply November 13, 2008
  • Discussion in Kids and teens · 9 replies
  • Recent mris show several hemangioblastomas located in the nerve roots of my 16 year old. I understand that this is a rare location for most VHL spinal tumors. I was told to have her rescanned in 6 -9 ...

breathing question

gale
  • By gale · New reply November 13, 2008
  • Discussion in Health management issues · 9 replies
  • I have been experiencing air hunger throughout the day, where I just pant for air for a few seconds. It doesn’t matter what I’m doing, even when I do nothing, I can’t breath. It only lasts a few seconds ...

Hemangioma tumors and/or meningeal cysts

roxielf56
  • By roxielf56 · New reply November 13, 2008
  • Discussion in Getting a diagnosis · 5 replies
  • I have recently been looking to rule out VHL in regard to my diagnosis. I have a hemangioblastoma tumors (retnal) that has been treated with cryotherapy recently. But the tumors found on my spine by my ...

Was I already tested

andypandy110
  • By andypandy110 · New reply November 13, 2008
  • Discussion in Getting a diagnosis · 2 replies
  • A month ago I had a hemangioblastoma removed from my spinal cord (L5). I've been told that because the tumor is so rear that it was sent to three different pathologist before they had a clear diagnosis ...

Webinars

gale
  • By gale · New reply November 13, 2008
  • Discussion in Finding emotional support · 11 replies
  • The VHF Family Alliance is now active with Webinars. You will need your telephone and an Internet connection to participate. To register, go to http://vhl.org/support/webinar.php. If you have already ...

Anyone with a child with Di Georege/VCFS

22q11mommy
  • By 22q11mommy · Posted November 11, 2008
  • Discussion in Finding emotional support · 0 replies
  • Hello I joined tonight to see if anyone else knows or has kiddos with this syndrome. My daughter is three and would love to find someothers our there who might can tell me more info or what there child ...

Cyberknife brain surgery

Raeanne
  • By Raeanne · New reply November 11, 2008
  • Discussion in Health management issues · 9 replies
  • Does anybody want to share their experience with cyberknife surgery for brain tumors? If you've had this surgery, can you please tell us what worked for you and what may not have worked for you. Thanks ...

My journey, thus far....

dizzybee
  • By dizzybee · New reply November 11, 2008
  • Journal · 3 replies
  • I am a 45 yo white female, my mother was almost 35 when I was born and she smoked throughout her pregnancy. My brother had mumps and german measles, which my mother exposed me to, but I never got. I had ...

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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.