Tuesday, February 18, 2014

Go, and Learn!

I posted this in the Facebook Cavernoma Support Group:

I just want to remind everyone that it is so very important to learn as much as we can about our condition. Most of our local Neurologist/Neurosurgeons dont know much at all, as nice and full of good intentions they can be. It is so important to be pro-active and truly believe that there ARE answers!

One Year ago today, I was discharged from my local hospital after a third bleed that a regular CT didnt show, being told that not only my symptoms were not related, but that there was nothing do to anyway. I was told my symptoms "could not" be related, because if my condition caused these, I would be dead. Hahaha I was there infront of him, couldnt walk, could barely talk, could barely breathe, begging for help, but was not getting it because "if they were related, I would be dead..." I was even told that my symptoms were anxiety!! For you who know me, you are laughing with me. During that time, we were on the phone every day with Dr.Spetzler assistant, being told that my symptoms were exactly of my condition and suggesting surgery. The surgery was scheduled without even being ever seen in person, just by trusting who we were told was the best in the world for my condition. Even Neurologists/Neurosurgeons here at UC told us this was ridiculous, calling Dr.Spetzler a "clown who operates a drive thru " Oh the doubts!! But deep down, we knew that HE knew, and they didnt. Two days later, we were on our way to Phoenix Arizona. We arrived February 27th. I had my pre op the day of my birthday, February 28th. I would say that my "real" birthday is 2 days long now, since surgery was March 1st and it is as if I was reborn in some ways. By the way, that third bleed that was undetected at the local hospital, is in my Report at the Barrow. Listen to yourself, Listen to your child, or your spouse. Its sad that Doctors know so little, but that only means we CAN learn.

We HAVE to!  

So, Go people, Learn! Empower yourself. You DONT have to feel so helpless.

Now you tell me, looking at this simple photo, how can the best neurologists/neurosurgeons in my City told me my respiratory troubles where not related at my brainstem cavernoma? Because they are "thaught" that any bleeding there equal one thing: Death.

Happy Learning, my friends.

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