So scared

General
1

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,

Heather

2

I just found out last week. Mine is 5mm and I see a neurosurgeon in two weeks. I’m scared! What does your neck pain feel like? Wondering if mine is Chiari related. Pretty sure it is.

3

Please don’t give up. There is help out there. Have you seem a chiari specialist? I have approached it in the past by saying ‘what’si t to you if I have another MRI? I’m paying for it. Wouldn’t want something to have changed and you ignored it’ I know it sounds horrible but… You have to do what you need to do for yourself. There are plenty of good doctors out there, unfortunately 1 good one for 50 bad ones. This site has a good discussion for doctors recommended by other people. Do not compromise with your medical care. This is your life, your body, your pain, not theirs. I am scheduled for surgery Tuesday. Praying for you…
Rachel

4

Lynn,
My neck is stiff and tight. If i bend my head forward then back up it pops and cracks. i also have a squeezing sensation in my neck and in the “hollow” part of my neck (right below my skullbase) is tender and if i press on it i get lightheaded. what does your neck feel like?

5

Rachel,
I have not seen a chiari specialist. i dont know who to go to. ive also been told by some that a chiari dr just wants the money and will tell everyone they need surgery. thank you for the prayers…much needed. i wish you the best on your surgery