Hello all! I am so glad I found this site. I am 35 years old. I began feeling exhausted and having weekly headaches about 2 years ago. The headaches went away with caffeine, advil, and rest. I finally went to the doctor in October 2012 for the exhaustion....just knew it was stress with a little one and full time stressful work. He sent me for a CT scan that showed intracranial hypotension. To neurologist who didn't know what to do for me. Sent me for MRI which showed intracranial hypotension. I researched myself about CSF leaks and went to Duke for treatment. In the mean time, I got a copy of my MRI which said 8mm herniation. My research led me to the conclusion this was part of my brain sag. Well, after getting to epidural blood patches at Duke in November, I feel worse. Neck pain, stiffness, tingling in hands/feet, dizzy, but no head aches. I am very tired. Both my neuro and neuroradiologist have said they can tell with one look at my mri that there is "plenty of room for the csf" and I am experiencing intracrainial hypertension now. I am on diamox. I have begged for another mri to see if the herniation is better/worse...no one will order it. say its not necessary. I don't know what to do.
I look forward to meeting everyone and hearing your advice, stories, etc. and making new friends. I am part of CSF support groups but Chiari is not a topic that is discussed there, although many have success stories of their herniations going away after their csf leaks were sealed. I don't know. I am close to giving up.
Thanks for listening,