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Diana's CSF Leak Story - Lasting 15 Years!

Bad Epidural Stories



Diana's Story - CSF Leak Lasting 15 years!

I have been searching in vain for a story anything like mine. These horrific "headaches" started 15 years ago. Yes, years. Several Neurologists later, I'd given up hope, thought this was the way my life would always be, and that I was a medical anomaly.

My pain is severe, debilitating, and extreme. It is also frequent and runs my life. Sometimes it includes projectile vomiting, loss of vision, hearing problems, confusion, and balance problems. It wears me out. The rushing and pounding in my head when I stand could knock down an elephant. While sitting, the pressure builds, and I know I'm in trouble. It leaves me weak and sick.

Finally, I have a Neurologist at the Cleveland Clinic, Dr. Mark Stillman. He knew what was wrong right away. We have successfully kept my CSF symptoms under control for over a year; this winter began backsliding. I am having a blood patch performed this week. I have actually had Doctors tell me I stand up too quickly! Are you kidding me?

The list is too long to relate everything I have attempted over the years. As I get older, it has simply grown worse. My neck is constantly sore, stretched feeling, painful. I bulldoze my way through the morning, attempting to accomplish everything possible before the onset. I have missed out on so many things. It is difficult to explain to others, as this is not simply a headache. My life is irrevocably altered.

I resent having not been listened to by other Doctors. No matter what I said, they knew better. They dismissed my symptoms, did not treat my pain.

I returned to school despite this nightmare. I am in the Honors Program and on the Dean's list. My professors have been understanding regarding my situation; much of my classwork was done from home. Nothing will retrieve these past years for me. Yet now I have hope for the future.

If you are a Physician reading this, please, LISTEN TO YOUR PATIENT. Do not assume they don't know what they are talking about. Do not be dismissive. I told my Dr. I had blood in my ears. I told him I was having seizures. He was unconcerned regarding the blood, although he confirmed it. As for those little seizures? They were just fast twitch, like just before one falls asleep. NO, they were NOT. I was WIDE AWAKE. I knew they were coming, I could feel it. This Doctor is now teaching at a premier medical school. He wasn't unkind, he was convinced of his intellectual superiority. He knew more than me. Yet it was my body, and my pain. I knew what was happening to me. Please, listen to us.

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