We are caught between a rock and a hard place with this condition, WANTING and NEEDING help to make the pain go away but, NOT wanting to endure MORE brain surgery. The irony does not escape me..!
It’s not an easy thing to go through, by any stretch of the imagination.
It’s a vicious cycle; Medication MAY help…to an extent. But, if there’s a problem with the plumbing (shunt), or the ETV is not wide enough to allow CSF through, there’s only ONE option.
It’s not a simple decision to make. It evokes SO much anxiety and PTSD from past experiences. Or, just knowing the possibilities and risks involved. No one can blame you for feeling this way.
Knowing the damage it causes (now), I’m personally not prepared to go through it again. Maybe when the day comes (I have no doubt it will), I’ll feel differently, driven by the INSANE need to be rid of excruciating pain. Relief brain surgery offers BUT, at a price…(literally and figuratively)!
If you’re at this crossroad right now, I know a few people who are, take it one step at a time. Moment by moment. And, make the BEST decision for YOU💙