New member - with congenital hydrocephalus
 

Hello

I'm Mark, 41, from England (UK)

I've had hydrocephalus since birth, having a shunt inserted at 6 months. It was replaced at 8 years, 12 and 39 (yes, 27 years with one shunt!)

When I was 12 (in 1977) my shunt blockage led to paralysis, blindness and coma (all, thankfully temporary). There were only 2 specialist hospitals that could implant shunts in England in the 70's so there was a delay in getting me to the hospital, which led to these complications.

In 2006 I had blinding headaches, vomiting, neck and back rigidity, double vision (and still the Doctor's thought it was migraine!). I had a CT scan at the local A&E (ER) which was apparently fine. 2 days later my optician noticed papilloedema and got me admitted to hospital. The x-ray showed that my 27 year-old shunt had calcified and snapped. Unfortunately it was too fixed inside me to remove so I now have another shunt on the other side of my head. Needless to say, I've now provided a CT scanwhile I'm well so that it can be used as a comparison should I again have symptoms of shunt malfunction.

My wife said she knew something serious was wrong as I wasn't complaining (as I usually do over minor aches and pains). I was convinced (after 27 years symptom free - that it was something minor). I'll know better next time!

It's good to find this board and to be able to reach out to other people, and parents of children with this condition.

All my best wishes to everyone. Thanks for taking the time to read this.

Mark

Welcome, Mark! :)

Wow, this sounded like me...until I got to the coma part. :( I'm so sorry you went through all of that. I'm also 41 and last had shunt surgery at 13--27 years ago August. :) I was dx'ed at 3 weeks old--completely by accident--and have had 6 shunt surgeries in all, some seizures, and not entirely asymptomatic the past 27 years, but most of the past 7 or so--save for the weather-related simple partials and very occasional grand mals (wacky hormones, infections, etc).

I'm glad you're here! :)

LIZARD :)