Multiple shunt revisions

minniemay · #1 07-31-2003, 07:34 PM

Hello,

I am a 19-year-old girl who*was diagnosed with hydrocephalus at the*age of four and a half months. The neurosurgeon found a cyst in my brain which cannot be removed. Until March 2003, I had*had*three revisions. Between March 26 and July 22, 2003, I have had five revisions. At the presnt time, I still suffer from headaches when I am in upright position. I will most probably need to go through a sixth one.

I have a VP shunt and the question that I ask myself is if it is best to change the entire shunt system and not only part of it, like the neurosurgeons have done for the last four revisions this year. They have good reasons to*not want to revise the entire shunt however, in several books which my mom and I have read,*it is mentionned to place an entire new shunt.

My other concern is overdrainage. It seems to be a very complex problem to solve. Before each revision, I show signs of overdrainage because when I*am lying down, I do not feel the headache*and when I am sitting or standing, I feel like I have a bowling ball on my head! Sometimes, I wonder if inserting two shunts would not be the best idea to be able to drain the cyst and the ventricles.

I would love to read about people who are experiencing or who have experienced a similar situation.

I also wish to suggest a book which informs people on hydrocephalus. It is titled Hydrocephalus: A Guide for Patients, Families and Friends.

Thank you to everyone who reads and/or answers this message.

#2 08-01-2003, 05:52 PM

Hi Minniemay,

well i hope it all works out. Im new to this i am a 24 yr old mother and my son Divine is 2 yrs old he was diagnosed last oct with a brain tumor and hydrocephalus which is until present.*

he looses his balance a lot and sometimes prefers to lie down esp. when he just waking up he'll wake up and scream sitting up then he'll lie down for about 10 mins and be ok.

Reading about you helps me understand what he probably is feeling. and for that i am grateful.* Sick kids says the shunt is working normally.* But I don't have much experience or knowledge on this matter.* So i'll stay in touch and see how your doing.* Hang in there and as i've learnt one day at a time.