With early diagnosis and better management, people with VHL are living longer and staying healthy longer than ever before. This is a good place to share what you have found helpful in your own life and family, and to ask for hints.
- By Myway · October 2, 2008
- 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 · September 28, 2008
- 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 gale · September 11, 2008
- 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 gale · September 2, 2008
- 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 Myway · August 28, 2008
- 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
- 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 ...
- By joyceg98 · August 22, 2008
- 1 reply
- What's a Webinar? -- A seminar on the web! On September 24 we plan to kick off a series of Webinars on topics of interest to this community. September 24, 8 pm Eastern / 5 Pacific Joyce Graff, on "VHL ...
- By diaryofageneticdefec · August 15, 2008
- 2 replies
- Is anyone else finding the new form of hydrocortisone a problem? I take 5, 5 and 5mg each day and the old company who made the 10mg hydrocortisone tablets were fine because they easily broke in half ...
- By Nelsonb · August 13, 2008
- 4 replies
- My right kidney had to be fully removed by the time its VHL tumors were discovered. Two surgeries to remove VHL tumors from my left kidney took it down to about 70% of full size, but all of that has still ...
- By Nelsonb · August 10, 2008
- 10 replies
- Hi all. I'm new here at Inspire as of this very day, but I've been in touch with VHLFA since the discovery of my VHL in 1995. Since that discovery, I've had 3 kidney surgeries ( complete right nephrectomy ...
- By gale · August 1, 2008
- 5 replies
- By Barbara Liston ORLANDO, Florida (Reuters) - Those consumers already worried about genetically engineered or cloned food reaching their tables may soon find something else in their grocery carts to ...
- By sjj · July 28, 2008
- 15 replies
- hi all i am in search of info. i have a 9mm tumor at c3 in my spinal cord. i have two shunts to relieve the pressure caused by the syrinx, both blocked within months and now there is discussion about ...
- By funmadjoker · July 27, 2008
- 7 replies
- does anyone take the Depo-Provera injection? I know the pill isn't recommended for people with VHL but wanted to check this other treatment is ok ...
- By joyceg98 · July 27, 2008
- 7 replies
- It's one thing to shop for good, fresh foods and cook a healthy dinner at home. It's another thing to eat right when we're on the go -- like at the hospital! How many of us have stood in front of a workplace ...
- By birdmom · July 8, 2008
- 2 replies
- HI I live in florida, I was wondering if anyone was watching the news this morning.If you didn't see it, they were talking about kidney cancer, RCC and that they have discovered a link between acertain ...
- By darkcloud · July 8, 2008
- 7 replies
- This is my first discussion and I have to apologize for my screen name. I didn't realize that this should inspire people. I feel especially depressed lately because of my husband's recent health "issue ...
- By joyceg98 · June 3, 2008
- 14 replies
- This week's radio show is about Appreciating Kidneys. In it we talk about how to take care of your kidneys, and what to do if they no longer work. I talk about my son's experience on dialysis, and about ...
- By Rick · May 31, 2008
- 2 replies
- Hello, I probably didn't put this in the right spot but, I have a tumor in my auditory canal that completely fills the canal. Comparing the scan to a scan done in 2/2007 shows growth from a miniscule ...
- By batley · May 14, 2008
- 5 replies
- hi is anyone going threw this i have been suffering from headacks for a while now it reminds me when i had a pheo once , i wake up with them an they stay in the day ive done a dairy and its readin every ...
- By batley · May 9, 2008
- 2 replies
- hi all i was wondering how many of you with vhl smoke ,does anyone think that smoking causes any more damage than what it would do anyway, i mean would a tumor pop up because we smoke and it be a vhl ...
