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Thalimar

Updated 7mo ago

My Experience with Multiple Shunt Revisions for Hydrocephalus

I'm wanting to share my experience with my many shunt revisions due to hydrocephalus. I am 41 years old, and have had a shunt in place since birth. I lived with it without any problems until 2015. I had to have a hernia repair March 2015, and not even 2 weeks later, ended up in the ER with my first of almost 30 shunt revisions that were done between 2015 and 2017. They tried so many different shunts, ventroperitoneal, ventroperitoneal, and ventriculopleural. They found me so many times obtunded unconscious in bed. And many times wandering the streets unaware of who I was. My neurosurgeon met with his entire team several times, they couldn't explain why they kept failing. I'm going on over 5 years now since my last revision. I still suffer from headaches, and some memory issues. I hate not knowing at what point I should go to the ER due to headaches. I don't want to seem like a hypochondriac.

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ZiggyStardust

2y

I’m sorry to hear your story 😥. I suffer from congenital hydrocephalus. Had shunt when i was young and had it replaced twice. I’m very familiar with headaches unfortunately. No one things you’re hypochondriac since you have real evidences for your complaints.
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Thalimar

2y

thanks, I'm just constantly struggling with the debate whether to go the ER or not when the headache starts, like is it cause I haven't eaten, lack of caffeine, or is it the shunt, and with my copay for er being $150, there's that aspect too 😢
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Pookie1214

7mo

I am not sure what congenital hydrocephalus is, can you explain that me

The content in this post is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.

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