I am new to the forum and came across it on my hunt for first hand stories from people who are living with a VP shunt to relieve intra cranial pressure.
I am a 35 year old woman who has been diagnosed with a sinus thrombosis in 2001, after a year of being told I was just suffering from stress....
Upon diagnosis, I didn't respond to Diamox and I was told I needed optical nerve fenestration to save my vision. This backfired spectacularly and I have lost 75% of my vision in my left eye (The surgeon hit the optic nerve 3 times, instead of just cutting a slit in the covering of the nerve...!). As I still had headaches, raised pressure and impaired vision after the optic nerve operation, an LP shunt was inserted.
This also didn't work for me as it overdrained, giving me low pressure headaches instead!
By then the doctors in my native Holland had all given up on me and I moved to the UK. The amazing doctors in the National hospital for neurology and neurosurgery have been amazing! They have removed the LP drain and put me back on 1500 mg/day of Diamox, which now does work.
BUT my neurologist is keen for me to have a VP shunt - apparently I am his patient on the highest dose of Diamox and he doesn't think I should be on it for that long (have been since 2005). He inquired at every appointment whether I have already changed my mind. I am actually thinking about it now, as I am starting to think the constant high pressure is starting to affect my memory and I am also getting a bit tired of being reliant on medication all the time - tired of feeling like a patient all the time.
But on the other hand - I haven't had the best experiences with procedures (even though I trust my neurologist and -surgeon 100%).
I would love to hear from other people what made them decide to have the operation ( if they had a choice) and how their VP shunt is treating them. I have only ever met 1 person who has one and she has told me all sorts of horror stories!
Also, do they shave off your hair before inserting the drain?
Thank you for your replies!!