Intense Pressure

Hey all. I'm brand new to this group. I'm nervous and scared, and frustrated - as you all are, I'm sure.

History - dx'd in Feb '12, and my NL pretty much shrugged his shoulders and held up all the hoops for me to jump through. I sought a NS on my own and got my PCP to send a referral. Dr William Butler of Mass General has offered the surgery to me, if I want to go ahead with it. But I'm terrified. Absolute Terror. I'm fairly stable at the moment, and coping pretty well day to day. I don't want things to turn worse on me. I don't recover from surgeries well - I've had a few. I don't want to be more trouble a year after the surgery than I am now. As it is I can't manage more than one or two basic household chores...

And I am now on my 3rd? neurologist who is making me re-try every med I've ever tried. Yay. It's very depressing. The one thing that has offered any relief is Botox, which, it turns out, is more expensive for a year's therapy than it would be for the surgery.

But anyway, my biggest issues outside of the headaches are the aphasia - I sound so dang dumb, unable to finish a sentence more often than not. And the ones I DO finish don't come out the way I had planned. I have a decent IQ and did well in college...but now I sound like an idiot and no one takes me seriously.

My other issue that you all might have some input on is an occasional EXTREME pressure in my skull. It truly feels like my skull might pop open. I get it when I am laying on my stomach with my kids - then I rise to a standing position. It might last for a minute - no longer, I don't think - then it fades as quickly as it came on. Is that a problem with the CSF flow?

So, I'm sorry for the dis-jointed nature of this post. I just have so many issues I'm grappling with. I figured if anyone could understand it's this group.

Hi ya LCJ,
I’m new here but I too get extreme head pressure. It started of as orthostatic headaches but now I get the pressure both on standing and again when I sit back down. I have read a lot and from my understanding its a lack of CSF on standing. I was wondering about craniocervical instabilty too. I hate the pressure - it’s almost as though you are being strangled and your head is going to pop.

Welcome to this wonderful group!

You will learn a lot from everyone & feel their support in every exchange. I wish you much success on this crazy journey of chiari...

Take Care,


I had so many problems with almost blacking out when I went from a sitting to a standing position. No meds would help with it.

I finally got relief a few months after surgery. It was an awesome feeling to stand up and not feel like my head was going to pop or that I didn't get tunnel vision. I still have a little wave of disorientation sometimes, but it's no where near as bad as it used to be.

If you're not happy with your neurologist, I recommend you find a new one. I went through three until I got one who understood my situations.

I was so, so, so scared of surgery because I was worried I would get worse, and in my book, it was hard to imagine a worse existence than what I was already living. I quickly got to the point where my quality of life was so terrible, I couldn't bend over to pick up anything because I would feel like I would black out and I had migraines every day. The night before my surgery, I was actually excited to get it done. It's been a year since my surgery now, and I'm beyond thankful I got it done.

One of my potential neurosurgeons said you will know when you need it. When that happens, you will feel better about choosing to have the decompression done. He was absolutely right. You'll know, too.