My name is Clare Llewellyn and in May of 96 I was diagnosed with an
ongondendriglioma or at least i think that's what it's called. It is
very slow growing but what makes it unusual is its size and my age. I
am only twenty-eight and it is the size of a large lemon situated in my
right frontal temporal lobe. I have probably had it for about twenty
years and not known of its existence. I suffered major seizures three
in total since its discovery.
Then last week I discovered I was pregnant, I had three fits within
half an hour which was very distressing and so my medication - tegretol
retard was increased from 400mg to 800mg a day.
I was wondering if there is any other medication out
there that can stop any further seizures and threat to my baby, I hate
the fact that I feel as if i'm waiting for a time bomb to go off as my
doctor and nuero-surgeon tell me that no more seizures cannot be
guaranteed. They have been great with advice, but this is not
good enough for me and i would be really grateful if anyone can suggest
anything to help me, give any advice no matter how small or if there is
anyone out there that has been through a similar thing and survived.
Please reply to - royllewellyn at ndirect.co.uk
