Originally Posted by Merl1n

Hey Pogo,
My initial shunt was inserted at age 24, there had been issues/symptoms for the 24 yrs prior to this but none were investigated until one day whilst driving down the road I had a massive bright light in my sight and within 10minutes I couldn't see. My then girlfriend (now wife) took me to the dr and ordered him to do a scan, which he reluctantly agreed to do. At the time MRI was new technology, so a CT scan was performed. This showed a large area of fluid, but being CT it was not well defined. Post surgery another scan was performed which showed the fluid had been reduced but that there was a large mass still present within the ventricular space. 3 months later I was in having further surgery to reduce the size of the mass. I was having some awful symptoms but the dr's had operated, the dr's had fixed, my symptoms were again labelled psychosomatic "It's all in your head..."
Fast forward 16yrs and the shunt had fractured, they operated again and replaced the shunt. Things were not good at all post surgery. I saw my PCP, who again stated '...dr's had operated, the dr's had fixed..' but when I went for a routine scan and follow up with the surgeon things were far from OK. I had developed 'slit ventricle syndrome'. The surgeon was less than impressed and queried why I had not been to see him sooner. Problem being that to see him I needed a referral from my PCP, the same PCP who wrote my symptoms off. Grrrrr. So 3 weeks later I was back in hospital having yet further surgery. Since then things have not been good, OK, so if I'm honest things have been bloody terrible. I have not been able to return to my previous employment and now have been told it is highly unlikely I'll ever work again. For me its all a case of management. Pain management, medication management, symptom management. I've given up on the dr's having answers. They have theories, not answers, hell, I can workout the theories vs symptoms better than they can and that's without me having scans/pictures to view and diagnose. But as far as they are concerned, I'm just the patient, I wouldn't know. They have done years of study, they know more than me, so my opinion is ignored until they have images. Bloody dr's.

Merl1n