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