So, I saw my headache specialist today, and she'd recently been to a convention where she picked up an OUCH pamplet for me. She figured I might already know about OUCH and CH.com, but got it for me anyways. It's a pretty nice little thing. :D

She also gave me the name of this guy, he's apparantly an Anesthisiologist in Dallas, Tx who has had pretty good success with the ONS. She feels like it might still be an option for me. Anybody heard of him, or dealt with someone who has?

Right now, I can't even try to get an appointment until we get everything with my shunt worked out. (I still have 2 months left of feeling like crap before it'll either work or they'll be cutting me open again) but I figured gathering info now might be useful.

That or someone else might benefit knowing a doc that deals with this specifically.

Uurgh...shunt is hurting, back to sleep I go.

PFDAN
Mystina

I was waiting to see if anyone knew this doctor well enough to give you feedback.....

Pixie-elf wrote on Sep 17^th, 2009 at 9:00pm:

Uurgh...shunt is hurting, back to sleep I go. PFDAN Mystina

Isn't there any pain medication for at least this shunt-hurting? : / or it is because you need to lay down? CH is enough and at least maybe shunt-pain could be reduced? I am clueless a bit about this stuff, so my apologies.

Marc,
  Either way, once all of my surgical problems are worked out, I'm going to see if his office takes medicaid... My doc wouldn't have recommended him if she didn't think he could help. So I may have feedback for you eventually.


MattyAA wrote on Sep 19^th, 2009 at 1:24pm:

Pixie-elf wrote on Sep 17th, 2009 at 9:00pm: Uurgh...shunt is hurting, back to sleep I go. PFDAN Mystina Isn't there any pain medication for at least this shunt-hurting? : / or it is because you need to lay down? CH is enough and at least maybe shunt-pain could be reduced? I am clueless a bit about this stuff, so my apologies.

Well, when I'm up for too long / do too much, it starts to hurt. That day I'd spent 4 hours in the car so it was pretty aggravated already. I've got stuff I can take, but it takes a while to kick in. And I don't like taking anything I don't absolutely have to. So all of that combined leads to my stubborn ass being in pain. XD

Hmm you really know a lot Pixie, thanks a lot for explaining : ) Sometimes you all guys know much more into medicine than the doctors I have been to.. really I have this feeling that it is like that.

I need to find good neuro though since on my MRI the... how you call them... rear part of brain, that is over spine entrance in skull is lowered a bit, and I wonder what it may be caued by..

MattyAA wrote on Sep 20^th, 2009 at 7:30am:

Hmm you really know a lot Pixie, thanks a lot for explaining : ) Sometimes you all guys know much more into medicine than the doctors I have been to.. really I have this feeling that it is like that. I need to find good neuro though since on my MRI the... how you call them... rear part of brain, that is over spine entrance in skull is lowered a bit, and I wonder what it may be caued by..

Hmm..that sounds like you might be talking about a chiari malformation.

Here are some sites on it.
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Here's the good news: It's not life threatening. BUT it can cause some problems, including headaches. You'd want to speak to a neurosurgeon about it, and see what they say.

If you're not having symptoms due to it, they usually won't do surgery.

I know about this because with IIH/PTC they check you for it, since it can obstruct the flow of spinal fluid. I've had a few friends with both. You can live a perfectly normal life with it, reguardless of having surgery to correct it or not. :)

PFDAN
Mystina

Thanks for reply Mystina :) Well I will try and contact neurologist and neurosurgeon if I find good one... since I live in Poland and it can be hard with all doctors leaving country because they pay better in UK : /