Discussions

Calgary Get-together June 7

Maple123
  • By Maple123 · Posted yesterday at 4:53 pm
  • In Canadian Alliance · 0 replies
  • My name is Leona DeVinne and I am an Alberta Chapter Volunteer. My family will participate in the Brain Tumor Foundation’s Fun Run/Walk the following day. If you are interested in joining the VHL team ...

Shunt complication or brain damage

Leila101
  • By Leila101 · Posted yesterday at 11:04 am
  • In Getting a diagnosis · 0 replies
  • Hi! I was diagnosed with VHL when I was 21. I had my first surgery 2 years ago, because a tumor was blocking my csf and I had to have it taken out. My doctor suggested I have a vp shunt put in just in ...

Shunt complications?

Leila101
  • By Leila101 · Posted yesterday at 10:56 am
  • In Medical treatments that worked for me · 0 replies
  • Hi! I was diagnosed with VHL when I was 21. I had my first surgery 2 years ago, because a tumor was blocking my csf and I had to have it taken out. My doctor suggested I have a vp shunt put in just in ...

pheocromocytoma

rollsroyce
  • By rollsroyce · Posted April 19, 2014
  • In Finding emotional support · 2 replies
  • Has anyone had one adrenal gland removed then gained a lot of weight round the abdomen thereafter and if so what was the reason. Since my adrenalectomy of the right adrenal gland I have also developed ...

Surgery and college

elainef66
  • By elainef66 · Posted April 17, 2014
  • In Kids and teens · 7 replies
  • After a few years "off" from dealing with VHL, complications are arising on several fronts... Our 19-year-old daughter, who's a college freshman, has a new cyst developing associated with a slow growing ...

Pituitary tumor

kimw2575
  • By kimw2575 · Posted April 7, 2014
  • In Getting a diagnosis · 3 replies
  • I have a tumor near my pituitary gland for about 5 years now and it just started to recently grow. I may have to go for surgery or radiation at some point. Has any else experienced surgery to remove this ...

Garlic as an alternative treatment for VHL

Mancho
  • By Mancho · Posted April 6, 2014
  • In Medical treatments that worked for me · 4 replies
  • A friend of mine suggested me to consume garlic before breakfast. I have hemangioblastomas in my cerebellum since 17 years ago. and I´ve had 4 surgeries and Gamma Knife. I´ve been eating garlic these ...

Spine sergery problems

charlesbernie
  • By charlesbernie · Posted April 3, 2014
  • In Health management issues · 0 replies
  • How to get sexual feeling back after back surgery, i had spine tumar vhl remove about 6 months ago. Allthou there are more problems like my walking that have not got better, it got worse. I have the problem ...

High Aldosterone

RedCello
  • By RedCello · Posted March 30, 2014
  • In Health management issues · 2 replies
  • Hi I am new to this site.... I had been having high blood pressure for a couple of years but i ignore it thinking it is just work stress. until mid last year it shot up to 180/100. I tried a lot of medication ...

Pancreatic cyst

joedolby
  • By joedolby · Posted March 27, 2014
  • In Getting a diagnosis · 26 replies
  • I have been diagnosed with a 3cm benign cyst in the head of my pancreas. I also found i have a benign 2cm cyst in the tail of my pancreas. I went to Moffitt cancer Center and the only offer was the Whipple ...

Hemangio vs vascular

Momov1
  • By Momov1 · Posted March 25, 2014
  • In Health management issues · 2 replies
  • I have hemangioblastomas in brain & spine plus tumora in eyes, kidney, pancreas. I just read the vhi tumors are highly vascular. Is that a kind of tumor or is a hemangio vascular? I'm concerned about ...

The VHL merry go round (slight return)

StevieH1970
  • By StevieH1970 · Posted March 25, 2014
  • In Finding emotional support · 11 replies
  • I'm having one of those dark nights of the soul moments (as I begin to write its 3am), its been almost 2 months now since I wrote my first post, because of the response I got I thought I might subject ...

Ground Breaking Clinical Research

VHLFA_Director
  • By VHLFA_Director · Posted March 21, 2014
  • In HLRCC · 3 replies
  • The Cancer in Our Genes International Patient (CGIP) Databank is now launched!!! Register now at www.vhl.org/databank and participate in this important clinical research study for VHL, HLRCC, BHD and ...

Ground Breaking Clinical Research

VHLFA_Director
  • By VHLFA_Director · Posted March 21, 2014
  • In Birt-Hogg-Dube (BHD) · 0 replies
  • The Cancer in Our Genes International Patient (CGIP) Databank is now launched!!! Register now at www.vhl.org/databank and participate in this important clinical research study for VHL, HLRCC, BHD and ...

Ground Breaking Clinical Research

VHLFA_Director
  • By VHLFA_Director · Posted March 21, 2014
  • In Health management issues · 0 replies
  • The Cancer in Our Genes International Patient (CGIP) Databank is now launched!!! Register now at www.vhl.org/databank and participate in this important clinical research study for VHL, HLRCC, BHD and ...

Pancreatic insufficiency

AxelZ
  • By AxelZ · Posted March 21, 2014
  • In Financial and insurance issues · 4 replies
  • Looking for alternative medication to CREON. Have just been diagnosed with severe pancreatic insufficiency and need to take up to 6 CREON 10000 a day. That comes to over R 1,200.00/month (USD110). As ...

Gamma Knife with a cyst

Christine29
  • By Christine29 · Posted March 20, 2014
  • In Health management issues · 4 replies
  • Everything I've ever read says Gamma Knife on a cerebellum tumor should only be done when the tumor is under 2cm, there isn't an associated cyst and there aren't any symptoms yet. I recently switched ...

Anyone on Lyrica?

Christine29
  • By Christine29 · Posted March 19, 2014
  • In Health management issues · 13 replies
  • Has anyone been perscribed Lyrica for pancreatitis pain? I met with a new doctor yesterday, in a Pain Management Clinic, to "be in charge" of the pain meds I need for my pancreatitis. He has no problem ...

Post ELST Swimming

Santiagodc
  • By Santiagodc · Posted March 18, 2014
  • In How my diagnosis changed my life · 0 replies
  • Hello, I was wondering if any of you who had had ELST removal surgery have any experience with swimming after the surgery. How has the surgery affected your ability to swim? Thanks ...

Ablation of kidney tumors

Brooky1233
  • By Brooky1233 · Posted March 11, 2014
  • In Medical treatments that worked for me · 2 replies
  • Just had ablation of the kidney tumour. Must of caught a nerve, my left testical i was in agony needed 30 mg of morphine to ease the pain. Worst pain of my life ...

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