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Health management issues
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.
Café-au-lait spots?
- By AZ-Patricia · New reply August 6, 2009
- 3 replies
- Café-au-lait spots? Café au lait spots or cafe-au-lait spots (CAL) are pigmented birthmarks. The name café au lait is French for "coffee with milk" and refers to their light-brown color. They are also ...
Care Plans in the UK
- By joyceg98 · New reply July 8, 2009
- 6 replies
- I understand that the UK National Health System has set a goal that everyone with a long-term condition be offered a Care Plan by June of 2010. Has anyone approached you about this? Have you requested ...
tumours on the optic nerve
- By diaryofageneticdefec · New reply July 5, 2009
- 3 replies
- I've known about the tumour on my opic nerve for over 10 years now. It grew a little when i was pregnant a couple of years ago but just this week it bled. I'm waiting to hear from my consultant what he ...
Help! Who looks after which bit??!!
- By Myway · New reply June 10, 2009
- 6 replies
- We as a family have lived with VHL for the past eight years, my son is the first in the family, his lesions are predominantly in his CNS. He does however have numerous cysts on his pancreas, and kidneys ...
What should be the last resort?
- By mkj · New reply June 4, 2009
- 3 replies
- Decision time is near. Now that surgical resection is not longer feasible for the multiple hemangioblastomas my son has developed in his brain and spine, what should be the next step, radiation therapy ...
VHL Family Alliance Annual Meeting - June 27 - Anaheim, CA
- By camron94 · New reply June 2, 2009
- 1 reply
- Hello everyone! I am pleased to let everyone know that the 16th Annual Meeting of the VHL Family Alliance will be held next month in Anaheim, CA! Please join us for a great day of learning, sharing and ...
Agressive Hemangioblastomas
- By mkj · New reply June 1, 2009
- 9 replies
- I am new to the discussion board. My son has been tested twice for VHL and the tests came back negative. He has had two surgeries to remove HBs from his cerebellum, one six years ago and the other two ...
dysphagia and bacllofen
- By dani · Posted May 30, 2009
- 0 replies
- over two years ago i had a spinal cord tumor resected and resulted in paralysis. in rehab i was given baclofen. i just got out of the hospital for dysphagia (difficulty swallowing) but none of the docs ...
Soft Spot/Craniotomy Swollen
- By funmadjoker · New reply May 30, 2009
- 6 replies
- I had a brain tumour removed in 2002 but they never covered up the area where they removed the tumour so have a soft spot. I find at times of having a headache the soft spot area swells up slightly. I ...
Manuka Honey
- By Myway · New reply May 22, 2009
- 3 replies
- Just a quick question - Has anyone heard of any benefits of Manuka honey - I have read that it is beneficial to recovery, internal and external? Thank you :o ...
Side effects from radiotherapy??
- By Myway · New reply May 21, 2009
- 5 replies
- I have read that some cancer treatments, radiotherapy being one, can cause thick saliva or mucus production in the throat or mouth areas interfering with eating, sleeping etc. My son had 6 weeks radiotherapy ...
Recurring kidney cancer
- By heidifay · New reply May 8, 2009
- 1 reply
- I had a partial nephrectomy in 2007 to remove a tumor off my right kidney (renal cell carcinoma). I was told I have VHL and have been having biyearly scans. Before my tumor was removed I was wasting potassium ...
Kidney Transplant - to do or not to do?
- By cmdoyle · New reply April 27, 2009
- 8 replies
- Hi there, I've had three rounds of cryotherapy for my kidneys since I started this process last July. I just had one this past weekend and new ones have started to pop up in the other kidney again, so ...
hydrocortisone
- By diaryofageneticdefec · New reply April 20, 2009
- 13 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 ...
eye tumors
- By batley · New reply April 9, 2009
- 16 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 ...
generic Keppra (levetiracetam)
- By nerfmom1 · New reply April 8, 2009
- 4 replies
- There is now a generic Keppra. Has anyone experienced increased seizures under the generic substitute ...
Radiation Limit
- By MariaKaminski · New reply March 25, 2009
- 16 replies
- Has anyone ever heard that they are limited on the amount of radiation one receives on a particular area and/or tumor? Is SRS or Proton Therapy part of that radiation limit ...
Antibodies and VHL
- By sunda1 · Posted March 24, 2009
- 0 replies
- Does any one know if your antibody levels can become elevated as a result of VHL. I had a double nephrectomy two and a half years ago and am currently on the kidney transplant list awaiting the call ...
Proton Beam Therapy
- By Myway · New reply March 24, 2009
- 9 replies
- Does anybody know anthing about proton beam therapy? Is it suitable for hemangioblastomas? If yes - would it be suitable to treat a spinal tumour that is embedded in the spinal chord? My son completed ...
GREAT Sutent News
- By TJ7334 · New reply March 12, 2009
- 2 replies
- I was listening to CNBC this morning when they announced that the clinical trials regarding Sutent would suddenly be coming to an end. Why? Because they wanted to stop using the placebos in the trials ...
