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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.
Unnecessary surgery- what can we do?
- By Heather31200 · New reply November 18, 2009
- 6 replies
- We just found out the other day that the spinal cord surgery that my husband had this May was unnecessary. We went to a specialist in Boston for a second opinion. The Neurosurgeon stated that my husband's ...
Cyberknife brain surgery
- By Raeanne · New reply November 8, 2009
- 27 replies
- Has anybody else experienced complications from cyberknife brain surgery? I had the procedure done in August of last year and unfortunately, I've become ill from radiation induced swelling of the tissue ...
Avastin and Lucentis for retinal angiomas?
- By hope520 · New reply November 3, 2009
- 14 replies
- I am a 33 year old female diagnosed with VHL in 1998. I have been treated for retinal angiomas since 1998. I have had cryotherapy, retinal detachment and ongoing laser surgeries. I would like to find ...
Thalidomide use for multiple spinal cord hemangioblastomas
- By Kberri310 · New reply October 23, 2009
- 5 replies
- I'm looking for any information for thalidomide use in VHL spinal cord tumors. Recently it has been brought up by my 13 yr old son's Doctors at Dana-Farber Cancer Institute, Boston. He has already had ...
broad ligament tumors/cysts?
- By kimbre · New reply October 23, 2009
- 1 reply
- Has anyone had experience with the broad ligament tumors or cysts that are associated with VHL ,though rarely? Just wondering what symptoms led to discovering them and how doctors usually find them? Thanks ...
First trip to NIH
- By Kiesharodriguez2001 · New reply October 22, 2009
- 20 replies
- I have VHL and finally after 8 years or so of dealing with this disease, I have finally been invited to NIH. I now have a 4.5cm tumor on my remaining left kidney. My question is...can someone give me ...
dizzyness after brain surgery
- By oddmanout · New reply October 20, 2009
- 5 replies
- hi there, I had a cerebellar hemangioblastoma removed on the 29th june this year. i spent 4 days in hospital and then they sent me home with some paracetamol! i recovered fairly quickly from the surgery ...
Lung tumors
- By ballroomdancer · New reply October 20, 2009
- 1 reply
- I am curious: 6 years ago when i was at NIH, i was diagnosed with so many tumors, including in the lungs (small ones). Over the years, i have been on top of all my scans (brain, spine, abdomen), but have ...
Experiences dealing with pheo tumors and loss of adrenal glands
- By ballroomdancer · New reply October 17, 2009
- 7 replies
- Has anyone had any symptoms as a result of losing one of their adrenal glands? Has anyone had any symptoms as a result of losing both adrenal glands and living on medication to replace the function of ...
Watch out for Prozac!
- By investigator2009 · New reply October 16, 2009
- 4 replies
- My mother has VHL, and we all know that there is something different in each of us that changes our health state. Well, for her, tumor growth always happens when she is stressed or depressed. At both ...
WHAT ROLES DO MEDICATIONS PLAY IN TUMOR GROWTH
- By ballroomdancer · Posted October 15, 2009
- 0 replies
- Looking for opinions on medications and concern for tumor growth in VHL: 1. Depression/anxiety medication? 2. Birthcontrol pills and/or hormone replacement for menopause? 3. Hormone medication to replace ...
Regaining sensation after spinal surgery.
- By TJ7334 · New reply October 15, 2009
- 9 replies
- A dear friend of mine had spinal tumors related to VHL removed recently. He had lost some sensation in a leg/foot prior to the surgery. Now he has lost sensation in his lower torso, including the ability ...
Looking for a second opinion
- By Heather31200 · New reply October 15, 2009
- 7 replies
- My husband wasn't diagnosed with VHL until he was 15 (1995) and had to have tumors removed from his brain. He lost the sight in his right eye after several radiation and cryotherapy treatments thereafter ...
Pancreatic Tumor
- By lifeandhope · New reply October 12, 2009
- 11 replies
- A couple months ago I had my routine CT Scan and found out that I have a 2.7 cm neuroendocrine tumor on my pancreas. The radiologist reading the scans looked and prior scans and was able to identify the ...
cryotherapy, any experience/suggestions?
- By Kertitans · New reply October 10, 2009
- 3 replies
- My girlfriend was recently diagnosed with VHL when she was also diagnosed with RCC. She has a 3.4 cm malignant tumor in the right kidney and her left is heavily populated with cysts, two of which are ...
Is an MRA an effective diagnostic tool?
- By constantring · Posted September 28, 2009
- 0 replies
- I just had an MRA and was wondering if it would be effective in picking up a hemangioma ...
Reactions to prednisone
- By brown868 · Posted September 17, 2009
- 0 replies
- I was recently diagnosed with polymyalgia rheumatica. My rheumatologist prescribed prednisone. I almost immediately had extreme shortness of breath. Despite the warnings to call your doctor if you experience ...
Which is best- MRI or CT?
- By kimbre · New reply September 16, 2009
- 8 replies
- Hi, I am wondering which scan actually is the best at detecting tumors in the kidney and pancreas? I have a CT from 6 months ago that says I have a solid tumor on my pancreas and I just recently (2 weeks ...
Two years after the surgery
- By goose · New reply September 2, 2009
- 9 replies
- My Stepson, Corry who is 20 had both adrenal glands removed two years ago. He was doing pretty well we thought, but now he has an upset stomach most of the time, and has a hard time sleeping. He has a ...
Renal cell cancer (VHL) metastasis?
- By kimbre · New reply August 26, 2009
- 11 replies
- Hi, I am wondering if any of you have experienced having renal cell carcinoma with VHL...if so, have any of you had a metastasis from it to your bones? What were the symptoms that you experienced with ...
