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

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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, March 29, 2009

Spring Has Sprung..so where's the sunshine?

Well here we are going into April already! Its been almost a year since my tethered cord surgery!! Last year seems to have went by in a flash. Not that Im complaining..2009 has to be better.
I went to The Chiari Institute on Wednesday the 25. I met Dr Kula..who will now be my neurologist at TCI.. it was my follow up for the Craniocervical Fusion and to meet with Dr Kula for the narrative medical report I need for my federal comp case.
Dr Kula was very thorough..we went into the office at 4:45 and didnt get out until 9pm! Long day to say the least. I had 4 mri's & a ct that day at Mahasset Diagnostic Imaging. We went over my entire file ( or should I say 2!)..went over all my current symptoms..and how we were going to treat them. My syrinx did collapse..woe hoo!!.. but as he said...it does damage that doesnt always reverse after flow is restored. Thats why I have loss of sensation on my left side. We also spoke of the dizziness..balance..blood pressure issues..and how my cardiologist is treating them. My low back/leg pain & numbness...and hip/left leg pain. Oh..and the headaches.
He ordered a slough of tests...tilt table..ct of lower back..xray of neck and lower back..blood work.. repeat urodynamic & follow up with urologist... follow up with orthopedist..and the best is a prescription for support knee highs & some funky girdle to constrict my veins!! for the dizziness! Thats real sexy in the summer! He also wants a copy of the recent sleep study I had done. So left with alot of homework.
I had an appointment the next day for an mri arthogram of my right shoulder..so I made it an all day project..and got the xrays & bloodwork done while I was there. I have an appointment tomorrow for the CT of my lower back. Follow up with the orthopedist on Tuesday and Urologist next Tuesday.
Iam very anxious to get the results of my arthogram & sleep study tomorrow. My pcp was on vacation..hopefully he will call tomorrow. My shoulder has really been bothering me..so Im almost positve what the next step is.
My cardiologist is ordering the tilt table test. Iam still wearing the halter monitor for my heart..so Im not sure if his is going to wait until it is done to do the tilt table. I guess I will find out tomorrow. The nurse said that "Nothing Alarming" has been recorded. Next they will tell me..it is all in my head!!! We shall see.
As you can see..Ive been a little busy. I feel like having all these obsticles in my life..is like having a full time job! I started acupunture again a couple of weeks ago because my chiropractor was out of commission with back surgery!!But he is back now. Dr Kula said I should still be doing my exercises for my neck..everyday..plus massage every week. My neck has been in knots..which doesn't help my headaches & shoulder. So I have been trying everything I can to help ease the muscle tension.
Im sorry if I missed anyone's emails...I have been trying to catch up on them and clean out my mailbox. So if I didnt respond..please resend it..it may have gotten lost in limbo.
I hope everyone is enjoying our spring weather..(even if it is rainy)..its a sign that nicer weather is on its way..hang in there.

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