Wednesday, May 11, 2011

Facts and Truth...The End?

I don't know about you, but typically when I am told something by my doctors, I take that as the truth and rarely argue with what I am told.  It takes a LOT for me to ask questions that could go against what they are saying.

"You have Neurofibromatosis," was a given.  "You have hydrocephalus and a brain tumor", was also something that made sense to me.  It explained my headaches/dizziness that have been a constant complaint for as far back as I can remember.

After a 2nd, now a 3rd opinion, I have gotten results that have left me feeling both relieved and confused. 

My new Neurosurgeon, who came highly recommended, seems to believe that what I have is not true hydrocephalus, but he wasn't surprised to hear that previous doctors interpreted my MRI that way.

He definitely saw my enlarged ventricles and brain tumor, but instead of hydrocephalus, he called my condition Ex Vacuo.  Something I had never heard of.

He compared my brain, to a big hole in your backyard (nice, eh?)  If you fit something tightly in that hole, it stays the same.  If you leave the hole empty, eventually the hole gets bigger, because there is nothing to keep contained.

So basically, my large ventricles (or holes) have become large over time and pushed my brain outward.  (Now my hubby can laugh when he says something about there being a hole in my head)

Ex Vacuo found in MRI's can be interpreted as NPH (Normal Pressure Hydrocephalus) and can mimic NPH with its symptoms leaving MANY people getting diagnosed incorrectly.

For me, my symptoms of daily "pressure headaches", have not only caused me a great deal of pain, they have also been dismissed by doctors. 

After several MRI's, spinal taps and countless consultations... and my initial diagnosis of hydrocephalus, I was told that it was too late for a shunt, leaving me feeling totally helpless.

So, while I am happy that my supposed hydrocephalus won't require shunt surgery... I am told that nothing can be done to treat my symptoms.

Do I go for a 4th and 5th opinion?  How do I know that THIS is the final answer?  I have a hard time believing NOTHING can be done.  I have a hard time leaving a doctors office being told to "hang in there".

Sometimes your hear news you don't want to hear.  Sometimes the truth ends up being something you never imagined.  But it's still up to us to not just roll over and take it.  We still have control over how we choose to handle the truth.  Whether it's good truth, bad truth or truth that has no clear solutions.

There's always tomorrow.  Thrive on!

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