I made that appointment. My husband went with me. I wish I could sit here and tell you everything that he said to me. I wish, now, that I knew all the details of what had happened to me. But, to be very honest, what I remember is a stranger sitting in front of me telling me that I had to have brain surgery within the next 72 hours or die. I remember looking at all the MRI photos and hearing him explain what was needed and why...but all I heard was that I was about to die. I know that my husband, with his mind for details, was taking in all the information and weighing it. He was like that. But all I heard was that I was about to die. I know that we went over every detail of those photos and that the neurosurgeon showed us the problem..but all I saw was the faces of my children. I was gonna die.

I am not going into all the medical stuff here, I am going to provide links to lead you to that information on the next page. What I want to give you here is a sense of the absolute horror of what was happening to me and tell you how very important it is not to ignore what your body is telling you. I had not listened to my body for a long time. As I became weaker with this disease, I had a husband that told me I was getting lazier. As the pain increased, I had a husband that told me I was getting whiney. And I ignored it too long. The syrinx had become so large in my spinal column that it was endangering my life.

This is the part where support comes in. I needed help and guidance and I needed it from someone who really loved me and was concerned about what was happening here so very fast. I called my "little brother" who lived in another state. I called to say goodbye. But now he was the one not hearing what was being said. He jumped into action. He made me promise to get in the car and come to him. He was sure that he could do something, anything, to change the flow of what was happening to me. For some reason...I did that. I guess I should have been worried about what was going on around me and stayed where I was with my doctors. But instead I got in the car and drove four hours to be with my brother. I guess I needed someone to put their arms around me. I needed a simple hug. And I went to get it.

When I got there I was amazed at what was "in the works". My brother, Vince, had a doctor waiting for me. The doctor got on the phone and starting calling other doctors and clinics all over the U.S. Bottom line is that these two wonderful men found me a neurosurgeon that not only knew what this disease was about but also had experience with it. And I had an appointment the following day.

This new doctor did not say much different from what I had already heard. He told me that it had been ignored too long and it was real bad. He said that I had a day or two before I needed the surgery and I should go home to my family and prepare. He said my chances were not good (13% for survival of surgery to be exact) and I needed the time to get things in order and to prepare my daughters.

Well...that was 5 years ago. I am here writing this so it goes to follow that I beat the odds. No matter how long I live, the most vivid memory I will ever have in my life is being rolled down the hospital corridor for what would turn out to be a 13 hour surgery. Lined up against the wall of that corridor was the people in my life. I looked in the eyes of those I loved and said my goodbyes...just in case. My two beautiful daughters, my husband, my mother, my brother, my sister-in-law, my niece and nephew, their spouses, my grandnieces, friends. It was so very difficult. That scene is forever etched on my mind.

What did not survive this was my marriage of 18 years. It was not a good marriage and the thought of an invalid wife was more than he cared to handle. I never returned to him. My wonderful doctor told me after the surgery that I could not endure one more beating from him. My body was too fragile and would no longer take the abuse. After a month I left the hospital and went to stay with my brother and his wife. They, and my mother, cared for me months afterwards and nursed me back to the point where I could take care of myself.

Today, I have pain but I cope. I am almost medication free. I do not know what is in store for me, but I have my children, a beautiful granddaughter and another grandchild on the way. Whatever happens next, I am ready for. I was given these last five years and I am so grateful.

Please contact me if you would like any additional information or need some support for yourself or someone else. I would be delighted to help in any way that I can.
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