still in hell

Quick entry, from this boring and painful place..

Surgery did not go as planned, so they'll have to go back in again. We are arguing the details of that a bit right now. *sigh* The infection on the back of my head must go away before we do anything... Unfortunately they weren't able to get good cultures b/c they didn't find the infection until they had already given me the standard IV antibiotic.

The really annoying thing is that I told them a few months ago it was infected. God forbid they believe me.

I am currently on a 24/7 video-monitored EEG... There does seem to be some seizure activity. Strange waves.

So tired.. sick of arguing with these people. My neurosurgeon is great, but we have a tendency to argue about EVERYTHING. Good thing it is friendly argument. I guess.

Head hurts. *sigh*

Signing off for now, just loving my time in hell. :( I was supposed to be going HOME tomorrow!!!! Instead I have to wait with these wires on, be discharged, wait, come back for more.


And my hair is gone. Just fuzzy, scarred scalp. *tears*


Blogger Dreaming again said...

Aww sweety! I'm so sorry! I wish there was something I could do for you. Please know that I've been thinking about you, praying for you!

I wish it wasn't so hard, I'm glad the arguments are friendly, but wish they weren't so. Sounds like my relationship with my orthopod.

I was all prepared to argue with him over my up coming knee surgery on Friday but he was in emergency surgery & I saw his PA ... I won by default LOL no surgery till school is out.

I hope they figure it out soon. And you get back to the land of the blogging soon, you are missed!

9:42 PM  
Blogger Eliza said...

Hi. I just recently found your blog: I'm also a Chiari/SM/EDS peep, and as I read through your postings, I keep finding myself saying, "Me too!" (your "Advice for Humiliation" post had me in tears, as I too spent YEARS fighting the it's-all-in-your-head/you-need-counseling/it's-called-conversion-disorder/you're-emotionally-disturbed/there's-nothing-wrong-with-you/you're-suffering-from-hysteria pronouncements, and, even after finally finding Good Docs who took me seriously and found all sorts of stuff going on, all of the years of fighting still haunt me in all of my interactions with doctors. I'm sorry you had to go through a similar thing, but thank you for writing about it: you captured it beautifully).

I'm so sorry this surgery didn't work out right and that you're already faced with another one, I'm sorry you had to shave your head for a surgery that didn't help, I'm sorry you're in pain. I hope this doesn't come across as creepy er nuthin', but I'll be thinking about you: I am still dealing with problems from my surgery that was done last May and now was just told that I need a craniocervical fusion, so I can only imagine how frustated and awful you must feel right now.

Anyway, I hope you don't mind a random stranger's commenting on your blog, but I just wanted to thank you for so eloquently capturing some of your experiences, so many of which reflect my own: I hope you are feeling as better as possible soon.

2:29 AM  
Anonymous Anonymous said...

so frustrating. i was talking to a patient with a vp shunt and i found myself referring to you as "i have a friend with a vp shunt who..." there is common misery out there, but i know that you'll have good days again soon... out of the damn hospital and into springtime. my thoughts are with you!

2:32 AM  

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