Am I a panicking parent?
 

Hi my daughter is 11 weeks old tomorrow and had a shunt placed when she was 1 day old since then she has had 4 further operations she's is a bright and happy child but I panic when I think her head has gone bigger. She never shows any signs that shunt isn't working even when shed had the other operations am I just being a panicky mum as I'm new to hydrocephalus

Hi Stace, I'm new to this site. I'm 44 yrs old and have had ten shunt revisions, with my shunt being placed at 9 wks old. I would say it's really important that you trust your instincts and keep an eye on your daughter when something seems not quite right. My mother tells me that I used to projectile vomit clear across the room, so that seemed a pretty obvious sign that something was wrong with me.

Whatever you do, don't ever let any doctor make you second-guess yourself. Your daughter depends on you to see her through any and all trials that may come with this hydrocephalus. For whatever it's worth, I was born at a time when they truly didn't know what they were doing. They experimented a lot and made many mistakes on me. But I'm alive and got a university degree and have had to become my own advocate with oft-ignorant physicians. Good luck with your daughter. I will keep her in my thoughts.

one of the first on the planet
 

Hello Stace,

I was one of the first people on the planet to undergo vp shunt placement surgery, over 45 years. I admit I see all these posts about people undergoing 10-15 revisions, as far as I am concerned these neurologists seem like complete imbeciles. I have had two replacements 39 years apart. I had 3 revisions, simply to replace the tube, based on growth spurts, all before I turned 13. Yes, projectile vomiting is a good way, unfortunately, to be made aware that the shunt is not functioning properly. A few things you need to be aware of is that no MRI, nor CT scan will generally be able to see whether the shunt is functioning properly as the person ages as a younger person, they can generally see the shunt and whether it is functioning correctly, as you get older, the two ways to see if there are issues are through a spinal tap and/or having an opthamologist look into the backs of your eyes and see if the ventricles are swollen. This information is not too scare you, but more for your knowledge. I was recently diagnosed with epilepsy, however please realize that I have had a shunt for as long as I have had, I asked my neurologist if the shunt had anything to do with it, his response, it's possible, I won't say yes or no, but it's possible you have a foreign body in your head. While there have been incredible advances in medicine, with me everyday doctors learn more and are able to be proactive, however I also try to let my neurologists anything I think they should know, no matter how trivial it seems to me, it let's them be more proactive with other people. There is no need to panic, just remember, everyday is just another day. If you have any questions, even though I am not a doctor, just ask, maybe I can put your mind a little more at ease.