My Story
 

Yes, I consider myself gosh darn lucky!

After bugging my FP about massive headaches slightly more than 2 1/2 years ago - he said, well, if you don't improve over Christmas come and see me and we'll get you an MRI. My pressure was so low that the Dura was peeling off from the inside from the skull and of course bleeding... He gives me a call and says "I don't want to alarm you, BUT, I've already called the ER and they are waiting for you - how fast can you get there?" A month later I was deemed well enough to leave - meaning they didn't know what in the heck to do with me - I had HUGE blood patches up and down my back - it looked like a war zone! Weeks went by and I kept on feeling worse and worse. We got wind of a guy in CA and started the process of getting documents together for him to do a desk top review. Then our neurologist did a referral up to Duke Univ. The neurologist up there said - I can't help you BUT - there is a lady in this other department that specializes in this exact thing. WHOA!!! Did she ever specialize... caring, compassionate, she used a small amount of dye to exactly map the location of the leaks. In my case, she could only close 28 leaks that first day - it took five hours. We were both exhausted. I've been on her table a total of 12 times in the past 18 months. Some of those have been to just to check pressure lately.

I never thought I would say this because it's been a living HELL the past 23 months. Yes, I am luckyPeter - I am alive - some day I'll get to see grandchildren -- I am disabled - but I manage -- I live in constant pain - but it is controlled by medication.

Pls let me know if you would like names and contact info...

Your Story
 

Lucky,

Thanks for the great positive story...so many of us are here because we need encouragement and hope... and I found some in your post!!
And I am so thrilled that you found a doc who listened!!

chiarichic

I also have bleeding in the brain
 

Thank you for your post! How are you now? I also have bleeding, so I need to seal these leaks in order to be able to be upright at all. Was Dr. Gray able to seal all of your leaks? Thanks