About Me

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Im 41..married to Bob..we have 4 kids..Chris 25, Nick 20, Mitch 18 & Tori 15

Me Brain

Me Brain

Story continued..

..July 3rd,07 was the day it all began.. unbearable neck pain..so after many dr appointments..I finally was able to see the drs with the answers at The Chiari Institute in Long Island NY..I was dx with Arnold Chiari Malformation,Syringomyelia, Ehlers-Danlos Syndrome, and Tethered Cord Syndrome..I also found I have herniated discs,buldging discs, Degenerative joint disease in my entire neck,cervical lordosis, spinal stenosis, valvular regurgitation in the tricuspid and mitral valves..this all hit me like an impossible nightmare..but it was a life that I had to make a decision to embrace..I want other chiarians to know that although there are not many of us out there..we all need each other to cheer us on.. some of us have great family and friends to support us..but there are still many of us who dont.. I have a supportive husband.. who see's how the headaches stop me in my tracks..or the neck pain that puts me on the couch with the heating pad..numbness..earaches and many other obsticles I have to overcome each day..many of my family and friends dont understand how it is in my shoes..Im here to share MY Story , highs and lows, information I dig up and offer support to people who need it...

Sunday, September 28, 2008

Tuesday is closing in....

Well...its getting closer. I went to CT today to meet with the Chiari of CT group. Two of my friends in NY car pooled with me to the meeting. Lacie from Albany and Nancy from Port Jervis. It turned out to be a nice day..considering the rain. I enjoyed meeting some new people at the meeting..and also seeing my friend Lisa from CT. She has evolved into my Chiari Sister..we talk almost daily.
I cant believe tomorrow is the 29th! I have to be in LI at 8am for 2 CT's, then preop registration and testing at 10am. I have an appointment with Dr Verma at TCI in the afternoon. My son, Chris and his girlfriend, Sam.. are going with me. We are meeting a couple of people for lunch. They are visiting from Indiana. Both are here for their first consult at The Chiari Institute. So the questions about TCI's proceedures are endless. I dont mind..thats what Iam here for. If I can ease someones mind by answering a few questions, then so be it. That is when I feel like there is a reason for having all these of the wall disorders.
Well Im going to try and get some sleep... I have an early morning. I want to say Thank you to everyone for all your prayers, support, concern and comforting words of kindness. It means a great deal to me.

1 comment:

lace1070 said...

I hope all things went well today with your pre-op stuff. No doubt you will be up late tonight. *SIGH* wishing you sweet dreams during surgery and a cool roomie in recovery ~ wish I was there in my journey getting this jurassic surgery done, too! All in due time, right? Know that you will be in my prayers ~ big hugs ~ talk with you soon :) Lace

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