Tuesday, March 24, 2009
The diagnosis
I wanted to start this blog to inform everyone of what is happening in my life. I have not been feeling well for along time, really since my youngest was born 19 months ago. I have been to the Dr so many times and had a number of tests run with the end result being STRESS. It has been a very stressful year but this was more. I KNEW that what I was feeling was more then stress. After some really scary neurological issues they thought I may have MS. I had an MRI that showed NO signs of MS, however did show Chiari Type 1 Malformation. The medical description of the disorder is on the page, but let me break it down in laymen terms. My brain is too big for my head! I am so damn smart. hehehe The base of my brain is longer then yours and hangs so low that it is crowding with my spinal cord in the base of my skull. Average Joe's brain stem is 0-4mm, mine is 9mm. This is causing my signals to get lost in translation due to the crowding. I am relieved to have an answer however VERY scared of my pending brain surgery. I can't believe I just typed those words, still feels like I am dreaming or speaking of someone else's situation. I DO NOT have cancer, I repeat... I DO NOT have cancer, this is a blessing from God. I however do have a totally rare brain disorder, that is non-curable. The good part is the surgery has 80% success rate to rid me of all pain and symptoms. At this point I will take any relief after the pain and suffering during the last year of my life. My surgery is scheduled for Friday, April 3rd at 7:30am. I will go in for my pre-op work later this week. Thank you for all the prayers, keep them coming. Looks like I will be in the hospital for 3-5 days with a long recovery of 2-3 months at home. It will be a long road, but can't wait for a fun PAIN free summer with the girls.
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Bless your heart. I will be thinking about you and keep you in my prayers.
ReplyDeleteWe love you so very much. We will certainly be praying and will do all we can to help you through this time. Love, Vicki
ReplyDeleteamy, i am so glad you have clear answers and a path to recovery. you have such a strong faith a wonderful support system that will carry you through this. please let me know if i can do anything at all. i love you very much!
ReplyDeleteI always knew you were smart, you are also amazing. God bless You.
ReplyDeleteAmy, sending you lots of love and hugs! Thinking of you and praying for you and your family...continue to stay positive and strong! We are all here for you! Love ya! <3
ReplyDeleteRasika :)
You big brained bia you! I love you and am here for you if you need anything. How soon do you think we can go out for celebration drinks after surgery? (just kidding!) You always seem to have a possitive attitude about things and that will definately help you through this tough challenge. Good luck and God bless!
ReplyDeleteAmy, we don't know each other but have been connected through a mutual friend, Crystal. She told me about your medical situation and upcoming surgery. I remember year's ago, hearing about my mom's brain surgery. You're right, "brain surgery" is wierd to say and daunting to think about. My mom's surgery went really well. You are much younger than she and medicine has advanced so much since her surgery 12 years ago. You are, I'm sure, in very good hands! Crystal told me about your friend who's a hair stylist - what a fun and wise idea! Wish we'd been creative like that for Mom! After reading your blog, I am so happy that people like my 23 year old niece, are pursuing the study of neuro-science and neuro-pshycology. Hopefully, with continued advancements in medical technology and research, others will not spend so many long months suffering and searching before they find answers. I will add your name to our prayer list at my synagogue. My thoughts and prayers are with you and your family. I wish you the best during surgery and a steady, full recovery! Lynn
ReplyDeleteI found your blog through a google alert I get each time someone blogs about chiari. I wanted to leave you a note letting u know that you are not alone in your chiari journey. There are a bunch of us out there who share a similar journey. I just had my decompression in Dec08 and haven't felt this good in almost 20 years! I will keep you im my prayers for your new 'birth' day on April 3rd! I have posted my blog address below if you are curious in my journey ~ hugs ~ Lace
ReplyDeletehttp://livelovelaugh-lace1013.blogspot.com/
Amy, I too, am a zipperhead. That will be one of your new titles after April 3rd. We are a select group who have had the decompression surgery and have connected to offer one another support. The road back after surgery is slow, but it is worth it. Thoughts and prayers going out to you and your family on April 3rd and as you recover.
ReplyDeleteJan
I've been praying for you every day. Take care of yourself, and I look forward to seeing you after your recovery! I hope it goes smoothly, I'm sure it will, you are strong (and apparently VERY smart!)
ReplyDeleteKatie
Marla-Amy thoughts and prayers are with you. I will be out of town through the surgery but will check the blog. Prayers girl, you will be fine doing your Mom thing really soon. Talk with you when I return.
ReplyDeleteAmy - I just got became aware of your situation and am praying for you and your family. You are handling this EXACTLY as I would expect. As a beautiful, confidant and positive woman. This is not surprising since this is exactly who you are. Best wishes to you! Sydney
ReplyDeleteAmy my thoughts and prayers are with you. You will come out of this feeling so much better like the lady said in many years. Our love to you.
ReplyDeleteAmy,
ReplyDeleteYour blog is GREAT! You have lots of prayers coming your way from Craig and I! If you ever need anything we would be happy to help! ;)
Resa and Craig
Amy we are thinking of you and I'm so proud of you for pushing for answers! You are exactly right in saying no one knows yourself better then you! We will be keeping you in our thoughts and prayers over the next 2-3 months as you have surgery and recover! You know I live right around the corner...so please....please...please don't even hesitate to call me if you need ANYTHING!!! Love the blog!
ReplyDeleteTerra, Jeff and Addisyn Badowski