Story No. 1 - 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.
 

Diana

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Story No. 2 - Lori's Story - Cervical Epidural For Pain From Herniated Discs

 My name is Lori. I am a 48 yr old white female.  I have been having trouble with my neck, shoulders and upperback for about 5 yrs now.  Afterhaving several MRIs and a Mylogram, I found out that I have herniated dics at C5 and C6. Not bad enough to have surgery, but the pain was awful, I hurt 24/7.

After consulting with my Dr. I decided to try a Cervical Epidural. I had heard both good and bad stories on the results of these.  I can say the procedure itself was not so bad, not as uncomfortable as I originally thought it would be. Although the day after (Tuesday) was pure Hell, I felt as if I had been hit by a train ! I hurt to move my upper body ! No matter how I moved my head, my neck hurt. I just kept on the painkillers and did nothing most of the day. Now Today (Wednesday) I feel wonderful !!!   A little stiffness in my neck when I turn a certain way, but other than that No Pain !! I have had No pain Pills today, and hopefully this will last for a while, I still have 2 more shots in my series of injections but not until I start to feel the pain start back. I would definitely recommend for someone to give an Epidural a try for neck relief.

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