10 months post compression, new intense headaches...

[Guest guest]

My name is , I'm 10 months post Posterior Fossa Decompression for a 10 mm

Chiari

1. My surgery went very well, I had a minor set-back in February with a small

csf leak

that caused some minor issues, but cleared up nicely. Until July, I was a

wonderful

success story.

Since July I've been having headaches off and on and recently, more on than off.

I went

back to my neurologist about 2 weeks ago and we discussed some options. She put

me on

Topamax to see if we could prevent the headaches (I could go on and on about the

ways in

which I hate this drug, but that's a different story for a different time).

Last Thursday morning I woke up with a splitting headache, just like my

presurgery

headaches, only I'd say worse. Located in the back of my head, some old feeling

like my

head was about to burst open at any second. Prior to surgery, the only thing

that every

helped my headaches was sleep and I was surprised when I woke up Friday with the

headache still present, and arguably even more intense.

It is now Wednesday and the headache is still here. It has not once, since last

Thursday,

even for a moment, left or lessened in pain. Even in the middle of the night

when I wake

up, it's there. I've had terrible bouts of dizziness where I feel like my feet

are going to flip

over my head. I can hear my heartbeat in my ears with the constant ringing and

see my

heartbeat in my eyes. My peripheral vision has twice gone gray (grey? I'm never

sure of

the proper spelling of that...)

I went to the ER last night (could not get ahold of my neurologist) and they

were able to

contact my neuro who I was able to see this morning. She ordered a new MRI to be

done

on Monday, gave me an rx for Percocet (to see if we can " break the cycle of

pain " ) and said

that this just happens sometimes and that there's really not much that can be

done.

I am devastated. I honestly don't know how to process that as an answer. She's

an

excellent physician and neurologist, and she seems equally frustrated and upset

for me.

She's willing to refer me to a more specialized neurologist and seek other help

(my

insurance is not accepted at TCI and I don't have the funds, it's not an option,

and has

been looked into, ditto in Colorado), but is there something else I should be

exploring? Is

this really common? How did I have 8 months without headaches? What changed?

It's terrible, but I'm almost hoping that the MRI will show something fixable

because then,

well, it can be fixed, or at least then there can be a solution. I can't live

like this. I really

can't. I've only barely managed to get through these past 7 days, I'm not sure

how I'll

manage many more.

If anyone has experience or advice or suggestions, please help. I'll take

anything right

now.

25 years old

10mm Chiari 1

New Orleans, LA