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i thought i was alone

kez02m
0 Recommendations

i live in australia and i thought i was alone but after reading your blogs i have learnt alot and that i'am not alone. Until recently i was lead to believe that children dont have as many problems until they reach there twenty's My son hayden is 11 touch wood he hasn't had any pheo's yet although he has had laser surgery on his left eye my doctor was not going to check him yearly as she siad that boys go through puberty later and wouldn't need screening until later but now to reading your blogs he going to have full vhl screening. We have only known about vhl for almost three years when my husband was dx with all known tumor related with vhl and also lost his sight i have two boys only one has vhl. my husband daughter from a previous marriage also has vhl she has a pheo on her adernal gland & a optic nerve tumors. So thank you all for sharing it has opened my eyes kerry

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6 replies

joyceg98

Welcome to the group!

My son's ophthalmologist also said "see you in 2-3 years", but what we have learned is that the risk of tumor growth is high during periods of hormonal change (adolescence, going on the pill, going off the pill, pregnancy, menopause, and male menopause).

In other words, we would suggest you take him for a checkup every six months during these teenage years. A little laser now and then can be very helpful in keeping retinal tumors under control. They are most successfully treated when they are small. When they get larger, the danger of damage to the vision goes up quite a bit.

Do you have a copy of our handbook? Please send me your postal address to director@vhl.org (DON'T POST IT HERE -- it's too public), and we'll be happy to send you a new member kit -- yes, even to Australia! There are some wonderful resource people in Australia as well. See

http://vhl.org/support/intlsprt.htm#affiliates

to find the contact person in your part of the country. The Prince of Wales Hospital in Sydney is one of our clinical care centers, and is a great source of advice and treatment.

All best wishes,
Joyce

joyceg98

Your posting got me to thinking about "when" puberty begins. It differs in every child, but is starting earlier and earlier these days.

Here are two of many articles on the internet
http://familydoctor.org/online/famdocen/home/children/parents/parents- teens/445.html
http://www.coolnurse.com/puberty.htm

From the VHL perspective, I think I would say that once a child begins to have any VHL affect, it is important to keep a close eye from that point throughout puberty. Just that normal growth time means that there is more "growth" activity of all sorts in the body, and the "human growth hormone" alone can spur tumor growth, not just the sexually related hormones that accelerate during puberty.

Since your son has a visible retinal tumor at age 11, my mother's recommendation would be to keep a close eye on his retinas (every 6 months -- more if the doctor recommends it, but not less). His vision is precious, and you would not want a tumor to get out of hand and impact his vision.

Perhaps others can share experiences with early VHL issues.

All best wishes,
Joyce

kez02m

hi joyce
my son is now having six months check up on his eyes now that they have found tumors. my husband has lost his eye sight in his right eye and only has six percent of vision in his left due to rentinal hemangiomas that how he was dx 3years ago.Our doctor has now referred us to Prince Of Wales Hospital in Sydney now we getting the best treatment thanks kerry

joyceg98

Great! And we're here if you have any questions, or if you just want to talk.

Best wishes,
Joyce

pupa

I have had several lazars and my doctor said if you came to me sooner I could have saved your eye sight Now I am having major vision problems in my good eye so why wasn't he able to save the vision I am seen every 3 months and at one visit boom lazar and now the goood eye has complications. Please help me I have seen the best drs in the world

joyceg98

There is no why. Each of us will have a different course of the disease. The doctor was not kind in saying he could have saved your vision if you had come earlier ("blame the patient").

He really meant that if you had been referred to him earlier he would have had a better chance of saving your vision. One never knows just how a treatment will go. With all the best training and best intentions, treatments do not always succeed.

You should have this conversation with your doctor -- what are your options at this point? And/or you should seek another opinion from a doctor with greater experience in VHL, unless you have already seen the best as you say.

Even among the best doctors in the world, there are differences in opinion and approach, so it is usually still a good idea to speak with more than one doctor. Certainly I would not give up lightly on your vision -- now is the time to seek information from multiple sources, find out what options are open to you, and then choose a course of action that feels right to you.

I am happy to talk with you if you think that would help. I certainly don't know more than your doctors, but I might help you assemble a list of pertinent questions. 1-800-767-4VHL, ext 4

Best wishes,
Joyce

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