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This fundraiser ended on 11/15/11

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This is a fund for Christys Brain surgery. The Funds will be used for medical costs & related expenses not covered by insurance. Thank you!

Well, Back in 2007 I had an MRI due to a bad reading on an EMG test that was being performed by my Charcot Marie Tooth docotor, at the time. She wanted to check and make sure I didnt have a pinched nerve in my neck or nerve damage due to the readings she was getting. A few days later I was setting at work desk and she called. She started to tell me she had some good news & some bad news. I answered OK. Tell me the Good news. She said you don't have any nerve damage but you have a Arnold Chiari Malformation thats measured 7mm. I said, "A WHAT?" Then she began to explain how my brain was to big for my skull but I should be fine. As she was telling me the possible symptoms they all sounded like the issues I was dealing with , with what was being called Charcot Marie Tooth. Hummmmm I thought. Anyway, I felt, at the time she was the doctor so she must know what she is talking about. I went back in 2008 only to find out that I had really went down hill in a year. I had also been laid off work during that time as well. So, needless to say alot had taken place in 2007-2008. I wasnt feeling very confident in the care I was getting & I decided to change physicians. In 2009-2010 I started seeing Dr. Wayne Massey at Duke. He seemed good enough to handle my issues. I told him about my Charcot Marie tooth & he agreed with the finding & I also told him about the Chiari malformation so he ordered an MRI. So July 23, 2010 I had another MRI and he checked my Chiari which measured 4mm at the time. Go figure. The size change. Weird! Anyway, he informed me it looked fine and my spinal flow sluid was good & we would keep a check on it every 4 (yes I said 4 years). Hummmm... I wasnt liking that idea either. Here I was trying to find answers and it seems the thing in my head didnt seem to raise any eyebrows but my own. This was not setting good with me. Something told me to keep researching. Not only did I keep research Chiari but I have also kept researching Charcot Marie Tooth disease. The two issues have so many things in common it is scary. I was noticing my body was doing some of the stuff my moms was (she has CMT also) but it was acting different. I was having different issues. My heart, head, bloop pressure, bladder, I just didnt feel like me. And My head just feels weird, Feels heavy. My neck & shoulders. Feeling sick on my stomach and the Ringing in my ears. My jaw & even my teeth hurt. Somedays I feel like a bobble head. The pressure is so tight its hard to deal with. Then not being able to get my family doctor to help with my pain is a totally different issue. Going back over my medical history knowing what I know now I can match each problem to chiari. It makes sence for the first time. As I have connected with others with Chiari I found Dr. Michael Rosner. He is truely the Brain Whisper. He has been the first doctor that has made all of my medical issues make sence for a change. He has made me feel like Im not crazy. He has given me hope that there is a posibilty of some kind of normal quality of life for ME! Just the fact that he looks at me as if I am telling the truth feels like the weight of the world has been lifted off my shoulders. Its is so stressful to already be going through these crazy things & then go to your doctor & they look at your like you have been sitting around thinking this stuff up all day. Come on now! It will drive a normal person over the edge. I seen Dr. M. Rosner for the 1st time back around the first part of April. He did a full Neuro Exam. I failed. Which means I have some serious neuro issues going on. I gave him my history and we talked. He explained alot to me & what he was looking for. I came back on May 9th to have my MRI's, Xrays & Tilt Table test done. Again, The results proved the Chiari at 6mm. I also had a positive tilt table test which means my Brain and nervious system are not communcating correctly. Making my blood pressure low & causing dizziness and/or fainting. I came back to his office on May 10 & we went over all the results & thats went we decussed the options. The best option for me would be to have Decompression surgery. This is where we are now. I have high hopes for what is yet to come. Yes we are having issues with insurance & money & the fact that Dr. Rosner is 4 hours away and my family will have to stay in a hotel while Im in the hospital will be costly even with the discount that they give us, we will make it some how. And then when we get home I will be limited Im sure for a good while til I heal. So I will need help for the house work (cooking, cleaning, etc...) and someone to help my son with stuff. And James, my husband, as much as Im sure he will try, will NOT be able to do it all. He will need help with yard work, etc... So I just wanted to take a minute to jot my journey down. Its not over. Its just begining. I will keep everyone posted. Its nothing amazing but it is MY story! Thanks for all the well wishes & prayers <3 Christy
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