Sunday, March 7, 2010

Can we say Emotional Train Wreck?

My Brain Hurts like nothing a NORMAL human being has ever experienced. I feel like I have been run over by a freight train, backed over by a Mack Truck, then dropped from the top of the Empire State Building… to say I feel aweful is one of the biggest understatements in history.

Yesterday I felt relief that Dr. Morreale was not willing to put a shunt in, ironically enough, after I wrote that post I prayed some more and realized why I felt relief, it wasn't because I don't want the shunt, it wasn't cause I am afraid of one or more surgeries that may or may not happen as a result. It wasn't because I was because I felt Dr. Morreale was a bad doctor, in fact it was just the opposite, it was something a good friend shared with me. She said a Good Doctor knows when to do surgery, a Great doctor knows when not to.

In other words they know when their skills do not meet the needs. He said flat out he didn't feel he could do it. I knew it before I walked in, I felt it the moment I saw him, he didn't test thoroughly the residents in the ER were more thorough and they were just residents. Anyhow, I think the reality is, HE was not the right doctor, not I am not ready for the surgery. A friend I met off one of my support boards is having a surgery at the Henry Ford down town, I think I may see about seeing her doctor. He knows about a different kind of a shunt for when the ventricles are too small, I may take in some of the literature on the Chiari 0 as well since everyone seems so hesitant to believe my Chiari is actually causing damage, if Dr. Heffez and Dr. Oro have seen it, perhaps they can look at it deeper here without sending me to Milwaukee.

Prayers have been a blessing, Please remember the others who struggle with this disease as well, while it may be invisible to you, the pain we live with on a daily basis is far from easy, the current estimate according to the Intracranial Hypertension Research Foundation is that there are only about 12,000 people in the US with this, now figure, the population of the city I live in RIGHT NOW is about 5,500 people and the township I grew up in has only 9,000 (they have steadily dropped over the years, maybe if I looked when I was diagnosed, they may have had 12,000, lol, I didn't look that hard, remember my head is killing me today) anyhow…that's ONE small town in Michigan on the east side of the state.

I have really felt bad, poor Chris is getting breakdowns every time I turn around, I know its getting to be tap time when I get this way, maybe I can hold out til April and my neuro will Schedule one, if not I will wind up in some random ER, where at least I will get pain meds for a while… my last one was April 2nd, so I am due.

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