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...

Wednesday, May 21, 2014

Update on Life

  Well... I know its been a while since my last post. Life has been hectic to say the least. My children are growing up... my two oldest have moved out. My youngest son, Mitch, is graduating high school. My daughter will be sixteen in September. Life is forever moving on. Its like riding a train that never stops. You can choose to enjoy the scenery or close the shades and only observe what is in front of you. (I think Im riding the crazy train!) 
  My health is ...well... still front and center. I had an additional Anterior Cervical Discectomy with Fusion (C6-C7) November 2012. The recovery... was not what I expected. I had already been trough one ACDF....C4-C6.. SO.. I thought this was going to be a walk in the park. Wrong. I experienced worse pain.. more severe headaches... and was unable to eat solid food for over 2 months. I had repeated images a couple weeks after surgery ... that just said everything looked normal for a couple weeks postop. I had a stitch poking out of my neck... to which I just snipped off..(at the advice of my dr). I went in for a follow up in February 2013. A slew of tests were ordered to see what was going on. To which.. I really didn't get any answers. The EMG showed ridiculopathy... but the neurologist who did it said it was probably residual because it was where Iam already fused. So I figured Im going to have to learn to live with it. 

  I started having issues with my medication in the fall. It began to make me sick and upset my stomach...(not to mention...not helping with my pain). After many different appointments with my pain management doctor, I had finally decided I had better go back to my neurologist for some fresh ideas on how to deal with my pain. In January I went in for my yearly follow up and to get some forms completed for the never ending Workers Compensation. It was to my surprise that the images I had done in April of last year (2013) had showed that my last fusion (C6-C7)... never fused! Iam once again... a bobble head!

  Scary. My worst nightmare had come true. Failed fusion. What to do. I have always been an optimist and encouraged people to be their own activist when it comes to healthcare. The one time that I don't follow up and get a copy of a report. The guilt that came over me for not doing what I have always done... double check..follow up...verify. Im angry at myself for not doing MY job... taking care of myself. I put myself in complete care of my doctor... and was let down...now what. 

  I have had repeated images... to which it showed... minimal growth and a bone spur from the hardware being loose. Im trying noninvasive treatments to help with my symptoms...but.. nothing seems to be helping. Im having my images repeated next month and anxious to see where I stand. Praying that maybe...just maybe... my bones are fusing. As I sit here today...with a wicked headache... its becoming more difficult to be optimistic.. to look on the bright side. I think that is scarier than my physical issues. My mental health has been beat up and dragged through the darkness of pain. Its all I have left. I feel the urgency of nurturing my emotional and mental health is screaming for attention.... 

  How do I climb out of this deep..dark... place in my soul. The lights are out... maybe I forgot to pay the bill...Maybe the bulb is burnt out... maybe someone sabatoged the connection. To try and focus on how to recover from this... I need a mental and emotional vacation..... where Im going to go ... I dont know. I know Im the only one that can "fix" this or maybe just put a bandaide on it for now. This feeling as if Im loosing blood at an alarming rate.... is scarier than anything I have ever experienced in my life. 


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