willow has claimed the iPad for Barney so I'm typing on my phone. in other words, expect lots of typos ;)
so I'm trying to write all of this simply so it'll be like a q&a with my doctors. okay? okay.
1. why does my head hurt so bad in general?
because of my previous surgeries and removing a large piece of skull, parts of c1 & c2 I have cranio-cervical instability. picture a bowling ball on a noodle. that's my head on my neck.
2. so why does this hurt?
in addition to the post surgery instability, I also have extra stretchy connective tissue. so when the connective tissue could/should help support my head, its too stretchy to offer any support.
3. anything else?
I also have a retro flexed odontoid. instead of pointing up, it's bent back and any time I move my head (to nod, sit up, etc) or go over bumps in the road, this bone "man handles" my brain stem. also, I have pain when I lay down or lean my head against something because the nerves have been so damaged during surgeries and they are touching "un organic material"...the metal plate rather than my skull.
4. can anything help?
yes and no. there is an option of a cranio-cervical fusion but you have to give something to get something. having metal rods and screws will create new pain and ill lose a lot of mobility. obviously. about a month or so ago, they started a new fusion that uses much shorter rods. the recovery is long and brutal.
5. so this is an option but not mandatory right?
I'll be getting 3 tests done in the near future. one will check to make sure that nothing I swallow is going into my lungs. one will check for tachahrithmeas (sp?). one will check for sleep apnea. if any are positive, the surgery will be crucial. the positive results mean my brain stem has had all it can take and I could stroke out...aka meet Jesus ;) put if they are negative I can wait as long as I can stand or until I have an increase of symptoms.
6. is it safe to live outside of a bubble?
I have to wear an aspen collar (comfy neck brace) when I'm in a car. whiplash could cause paralysis or be fatal because of the brain stem situation. it's dumb and uncomfortable and embarrassing but when I wrap a scarf around it just right, you can hardly tell. :) getting bumped into or hitting my head will raise my base line pain for about 6 weeks but shouldn't be fatal. I hit my head pretty good on the plane ride home and this is true!! :/ if I have a more severe bump or fall, I'll be in immediate contact with the neurosurgeon. I'll also be doing cervical traction each night to reset the bones.
7. what now?
assuming tests are negative and things stay relatively the same I will have scans each year and a VIDEO CONFERENCE with the neurosurgeon in ny. how awesome is this?? 2 years ago that was illegal in 48 states and now insurance pays for it. woo hoo.
I think this sums it up pretty well. the visit was extremely informative. obviously the prognosis isn't rainbows and unicorns BUT it could be a lot worse!! please pray that all my tests are negative/normal so that I'm not forced and rushed to have surgery. :/
God has been so so so faithful and has provided beyond our wildest expectations. we are SO blessed with such supportive family/friends/church.
if you have any questions ask me. but don't google it. people love to post their horror stories and I'm determined to only have positive thoughts.
love love love y'all.