Hydrocephalus Community
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Second Opinion

I was recently diagnosed with mild congenital hydrocephalus (non-communicative) and a 2 cm. lipoma. My doctor believes that the hydrocephalus is congenital because I also do not have a septum pellucidum formed in the mid-section of my brain. I am in my twenties and have suffered horrible headaches and some vision problems over the last 10 years or so. The headaches recently were lessened after being prescribed propanonol and sumatriptan. I was ready for ETV surgery when after the last MRI, my doctor told me that I don't need the surgery now. My condition has not improved at all. It has also not gotten much worse. He believes that since I am no longer in constant pain (due to medications I don't want to be taking forever!) that I shouldn't take the "risk" of surgery and wait it out (until it gets worse?) I want to believe that this doctor knows what he is doing however, after other doctors were ready to do brain surgery to remove the lipoma and ETV or shunting, I am not sure who to trust. Is it okay to leave my type of hydrocephalus untreated? Is it possible that my type of hydrocephalus will just stay the way it is now for the rest of my life? Will taking propanonol make it more difficult to know if the hydrocephalus is getting worse (symptoms will go unnoticed)?

Any advice would be much appreciated!
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