Discussions
- By footballer · Yesterday at 10:51 am
- In Getting a diagnosis · 1 reply
- Hi I am a 20 year old male and I was just recently diagnosed as having the VHL gene through genetic testing. Many of my family members on my mothers side have the disease and have had symptoms, including ...
- By FranMott · October 7, 2008
- In Getting a diagnosis · 0 replies
- The VHL Family Alliance has an ad appearing in USA Today Magazine. It's out now. It's great! It can be found on page 21 E. We're excited! Please take a look. -Pass it around. It's another way we're working ...
- By heatherbacon · October 2, 2008
- In Getting a diagnosis · 1 reply
- It all started with the ear tumor, paraganglioma is what my Doctor said about 8 years ago. After 3 surgeries on my right ear, two surgeries on my neck to get rid of caroid body tumors,and a recent adrenal ...
- By StillKickin · October 2, 2008
- In Finding a doctor · 2 replies
- Hello everyone, I am looking for a New VHL Doctor in Doylestown Pa Area. Just moved here. I am seeing Dr. Shipkin (Neurologist) who has had experience with VHL, but I need a Dr. to see on a regular basis ...
- By Myway · October 2, 2008
- In Health management issues · 5 replies
- As promised I said that I would let you know what questions we asked and their answers - as best I can. First, we spoke to my son's oncology consultant as he has carried out the two SRS treatments for ...
- By batley · October 1, 2008
- In Getting a diagnosis · 3 replies
- hi all does anyone know about enfefalightus, sorry i know i spelt that very wrong , its where the fuild is bein blocked from the brain and its infected, my brother has been very poorly with this he has ...
- By batley · September 28, 2008
- In Health management issues · 6 replies
- hi ive read some stuff on eye tumors by the opic nerve, now ive had one there for 6 yrs and its been ok untill now , just been told its got slightly bigger , ive always been told that i should never have ...
- By Cancerkid777 · September 25, 2008
- In Kids and teens · 1 reply
- Hey, Cancerkid here. You know my lemonade stands that I told you about? Well I have another 9 in may!! My friends in school are sooooooooo great! Instead of one lemonade stand, I had so many volonteers ...
- By batley · September 24, 2008
- In Parenting issues · 1 reply
- ive read some things on here about people bein tested for vhl and it commin back no vhl but they do have it , im confused , i have vhl and my daughter my son come back with a no but do i really beleave ...
- By batley · September 24, 2008
- In Getting a diagnosis · 7 replies
- can anyone tell me what is the size of a kidney tumor can go to befor it should come out , my brother has one at 3cm .9 he been told ...
- By beccaloo · September 24, 2008
- In Getting a diagnosis · 2 replies
- I've been diagnosed w/VHL for about 6 yrs. now and am, what I like to call "Circling the Airport" status. This means right now we're waiting and monitoring. I get my kidneys, pancreas, and brain + spinal ...
- By gale · September 23, 2008
- In Finding emotional support · 8 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 ...
- By amykate · September 18, 2008
- In Finding emotional support · 12 replies
- I was diagnosed with VHL last October after discovering that I had a rather large endolymphatic sac tumor in my left ear. I had that removed in January. I currently have a tumor in my cerebellum and a ...
- By Melbeth · September 16, 2008
- In Getting a diagnosis · 9 replies
- I was just wondering how different people's spinal tumors or cysts first began to present themselves. I've been having some neck and lower back pain, but don't want to jump to any conclusions. I'm also ...
- By gale · September 11, 2008
- In Health management issues · 0 replies
- By: Dr Weil Try the Alexander Technique for Back Pain A new British study has confirmed that the Alexander technique, a type of body work that focuses on improving posture, in combination with a brisk ...
- By TJ7334 · September 4, 2008
- In Medical treatments that worked for me · 8 replies
- What has been suggested for VHL patients with neuropathic pain, especially related to spinal tumors? What has worked and what hasn't? Does anyone have comments on the Laser Spine Institute in Tampa? They ...
- By gale · September 2, 2008
- In Health management issues · 1 reply
- http://articles.mercola.com/sites/articl es/archive/2008/08/26/cell-phone-dangers -what-they-don-t-want-you-to-see.aspx?so urce=nl ...
- By Dig62 · August 30, 2008
- In Getting a diagnosis · 13 replies
- Hi all, Long time since I posted. Quick review of my history: I had clear cell renal carcinoma (right kidney) at a young age (37). Then last summer during routine CT scan they found a nodule on my left ...
- By Myway · August 28, 2008
- In Health management issues · 17 replies
- First I would like to thank you all for your prayers, my son had a spinal tumour removed and a syrinx decompressed last Tuesday 19th, he is home and recovering well! My son has another symptomatic tumour ...
- By joyceg98 · August 26, 2008
- In Health management issues · 0 replies
- Have you ever gone outside your home country for medical treatment? There is a radio show at PowerfulPatient.org that will begin on September 9 on this topic. I am interested in your own experiences with ...
