Tuesday, January 5, 2010

Tired of decisions

Some days - I just want to run away. Once again I admit to being tired of the emotions, the roller coaster that has become my life. Looking really hard at which Docs I need to see today. Funds just arn't there to see as many Docs as I want. Biggest decisions for today are - look into having the "regular" slice your head open about 8 inches or the endoscopic version, 2-3 inches. Now ladies - we can say size doesn't matter but when it comes to having your head cut open it does.

Part of me wants so bad to go see the Doc who does the small version but as far as stats go - this surgery has even LESS data than the traditional surgery. So - how can I possibly make an informed decision? If I go by what the others Docs say, most will say - not enough long term studies to prove it is effective. Ineffective means a repeat surgery down the road. NOT GONNA HAPPEN! I cannot go through this again. It is infecting every area of my life, except for spiritually which is amazing but still. I snap at the kids, at Dave, I don't listen when my kids tell me stories about school because I am thinking about this, I don't get much done around the house because I am trying to find peace with this stupid surgery. Not gonna do this to my family again. So I guess maybe my decision has been made?

Yet I find myself lusting over a 3 inch incision. Less risk of a spinal fluid leak post-op, less time in hospital, maybe being able to not shave my entire head, less pain - sounds like a vacation on a desert island surrounded by Cabana boys fanning me compared to the regular surgery. Sometimes, doing what is best is harder than doing what is easier.

I have the appointment with Dr. Sekula in Pittsburgh scheduled for next Tuesday, the 12th. Yesterday I tried planning the trip. What a nightmare. Plane is out of the question, too expensive, me driving isn't an option so train or bus it is. Somehow the thought of spending 10 plus hours on a bus or train for a trip that would take 6 by car has me second guessing all my options. Do I just bite the bullet, rent an SUV and pray for no snow, taking many rest stops on the way? Maybe. I don't like any of my options. I feel like a spoiled brat.

2 comments:

  1. I wanted to say 'hi' and let you know that you are not alone in your chiari journey. At times all things can be overwhelming ~ I wanted to pass along a link with suggested docs who have some chiari knowledge ~ http://www.chiariconnectioninternational.com/doctorlist.html
    The list is broken down by state Maybe there's a doc on the list who is closer to where you live. there's nothing more frustrating than going to a doc who is clueless about chiari. Hang in ther and feel free to contact me anytime if you have any questions or just want to vent. Hugs ~ Lace
    lacieheiser@gmail.com

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  2. Thanks Lace! I did find a Dr. I am very happy with and just posted the story.

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