Hello, I am a student of Newark Academy, a high school in NJ. I do not have VHL but would like to learn about it and how it has affected you and your family. I have a few questions I would appreciate if someone or a parent of someone who has VHL could answer. Please make your answers as thorough as you feel comfortable making them.
1. At what age and how did you or your child get diagnosed with VHL?
2. What were the symptoms and effects, and how have they developed?
3. What treatments and medications, if any, have you used and how successful were they?
4. Do you have a family history of this disorder?
5. How does/did VHL affect you or you child and those around you on a daily basis.
6. Any additional information you would like to share.
Already a member? Sign in
Welcome to Inspire!
What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.
Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.
How - Joining Inspire is completely free and usually takes less than a minute. Join now!
Questions about your VHL Diagnosis
- By maccabbe
- Posted February 18, 2009 at 8:47 pm · 3 replies
- In How my diagnosis changed my life
- Shared with the public
- Edited February 18, 2009 at 10:41 pm
3 replies
- Oldest first
- Newest first
- By Markus
- Posted February 19, 2009 at 7:08 am
- Report post
Maccabbe
I'll gladly answer yuour questions.
Firstly, I was diagnosed in July 2000 (age 36) with a tumour on the brain the size of a golfball and a cyst the size of a tennis ball. These were removed on 9 August 2000. Symptomes were severe headaches, loss of balance, loss of using arms and looking ascue.
The headaches at first was in front almost like sinus headaches but later moved to the back of the head which feels like your scull want to explode.
A mixed dose of headache tablets every 2 hours releved the pain slightly but nothing I took could break the pain.
Another tumour 2cmx2.5cm was found on the spinal cord between T4 and T6 which was removed on 2 Oct 2000. Symptomes were needles-and-pins feeling on the soals of your feet and a strange sensational feeling in my knees. No medication was taken for this before the operation. After the operation, I started to get nervious twitches in my right leg. Medication used at first - Tegritol 75 (used for about 1 year), then replaced with Lioresol 50mg per day (used +/- 3 years), then replaced with Neurontin 4-500mg per day (used for +/- 1.5 years) and then replaced by Lyrica 300mg per day (currently using for about 5 months).
I must say that Lyrica is most definately the best medication used so far for the treatment of the twitches. All of the negative side effects I experience with the previous medication are not present with Lyrica and I cannot identify any side effects as yet. Even the sleeping tablet used with Neurontin was stop when I started using Lyrica.
- By Markus
- Posted February 19, 2009 at 7:31 am
- Report post
I do have a family history of VHL which was tracked back to the 1840's.
The effect VHL had on my life and those around me was cancerious. I'm so careful what I say to my own mother because of the lessor they know, the better otherwise they are in panic. Our own household is dealing with VHL different to most because we know a little bit more than the average person with VHL or their caretakers because of my dealings with doctors, etc. I'm also still a bit weary to talk about VHL and only those thnigs that are important but do not cause panic. My son is also VHL positive and I've done a lot of education with him on the thing to look out for, self examinations, etc. and he treats it as just a flue. He also had a few operations already. I found the younger generation to not be as worried as what we are but maybe that will still change. VHL caused me and my son to be much closer than before and we can openly discuss things I never thought was possible.
I believe that once diagnosed ie clinicly of via DNA testing, it is of utmost importance to do counselling for the whole family. This helps with talking about specific fears and teaches people to communicate freely about anything related to VHL.
For any additional information you require, please let me know.
- By katmine
- Posted February 22, 2009 at 7:45 pm
- Report post
I was diagnosed at age 51 after a tumor/cyst were removed. I had abnormal vomitting, so they checked my abdomin and found that I had cysts on my kidneys and pancreas. I was then diagnosed with vhl.
I had headaches, nausea and dizzyness.
The tumor was in the middle of the nausea center of the brain so I still take Haldol, Remeron and Clonopin. They seem to work well.
I think my mother and her brother had it.
I have Ataxia. I'm blind in my left eye. I have Epilepsy. It slows me down. However, I'm still able to work. I'm very fortunate to still have my job.
There's no cure for vhl yet. Any donation to the Family Alliance would be greatly appreciated.
Add to the discussion