sorry guys for popping in here at diagnosis then dissapearing untill after surgery, but i guess my coping mechanism was to recede from everything....even stopped returning phone calls to anyone other than my mom, dad, brother and husband. i just didn't feel like dealing with being sick. but i have so many good things that i hope will help others that i popped back in to share them.
up untill surgery (nov 17) i was getting more and more fatigued, my tinnitus was unbearable..still is.. and the fullness in my ear was driving my crazy!! i was working up untill the surgery waiting tables. had quit my bartending job due to the management being incredibly toxic (read: alcoholics) and felt like i was spinning my wheels waiting and waiting for the time to come. well it did.
last sunday i went in for my MRI and after 45 minutes with and without dye they informed me they did the wrong test and they should have been testing me with guides on on the surgeons would have a "GPS" for my brain. so i was whisked off totally unprepared and had my head shaved and these wierd sticky things put on. then back into the MRI. and back out. and back in. got home at noon after arriving at 7 am. and i'm sure you realize i am not a morning person being a bartender and all!!!! not pleased.
went out to lunch with family, and was trying so hard not to sleep so i could sleep at night, but somehow managed to pass out untill the next morning at 5am when i had to get up and get prepared for surgery. prehospital i had to bathe on two occassions with antibacterial soap so i didnt get an infection from the germs on my skin. so by now i am feeling pretty vulnerable...i am somewhat of a glam queen, and having to remove my acrylic nails, jewelry, shaving half my head and washing with hospital soap made me feel pretty yuck.
so, my mom dad bro and husband brought me to the hospital, and after they checked me in i was taken immediately to preop....not ready!!!!!!! laying there with nothing but a johnny and a blanket with noone was very lonely. i was reduced to a name on a chart! the nurses tried to start my IVs, but ultimately the anasthesia team came in and gave me two IVS and an arterial line. the OR nurses were AWESOME!! they kept telling my it sucked and i would be abnormal not to be angry and scared..and they would take great care of me....i felt pretty calm about it all. so i started my countdown........
woke up who knows (10hours) later asking for my family....i didn't understand why they weren't there. i vaguely remember being told the tumor was gone. then i have hazy memories of my family hugging me...i yelled at my husband later for squeezing me too hard and he said he barely touched me so i was sore!! i remember asking for my dogs, and ice cream. then they sent everyone away and i really wasnt upset because i wanted to sleep. don't know how long i was in recovery, but the first night i was really confused whether i was in recovery, ICU, or on the floor. i actually was in ICU for 2 nights.
the first night was absolutely the worst. the morphine didn't control the pain so they started oxycodone in between doses. and i would sleep for 5 minutes and then be convinced i had been out for hours. the headache was excruciating. in the morning i had to have a CT scan and was convinced i wasnt going to make it! my FABULOUS nurse gave me extra pills and we started out....of course after nothing but anasthesia for over 24 hours, and motion sick anyways, i immediately threw up. but it wasnt so bad. CT scan over! results told me that i had air in my head from the surgery (normal) which was causing the pain and sure enough it subsided quickly.
i think i had an MRI that night...time gets hazy around this bit...but found out that not only did they get the tumor out, they had preserved my hearing nerve too! also, they used mesh, sealant and were actually able to screw my skull fragment back in!!
thursday...off to eye doc...no scratching, but have to lubricate a lot.
thursday night...HOME!!!!
today is tuesday and i feel bruised and sore, but overall MUCH better than i had planned.
things to note:
i had lost ALL balance on AN side before surgery, so i have no issues recovering balance.
had facial numbness and lack of taste and smell on AN side and that recovered immediately!! my soap smells SO good!!!!!!
fullness on AN side has subsided, but not tinnitus...hearing still gone, but promised with time it will get better.
facial nerve was totally weak after surgery, but it gets better every day!
my dressing was removed in the hospital and they said no problem cleaning my wound or washing my hair, so i did so yesterday and it felt great!
got dressed in jeans and boots and went to dinner with mom last night and wasnt terribly wiped out!!!
not so nice things:
swallowing has been hard. even the tiniest bit of solid food took about a week to be able to swallow and if i cough my head hurts!!
coming off the steroids they had me on for anti swelling was awful
one week later, i am very sore in the middle of my sleep so i have an arsenal of pills by the bed. i find aleve helps most of all.
drinking is pretty funny! straw is hard, can't get suction. cup is hard, i dribble. have to have my head at a certain angle or liquid comes out my nose!!
overall, i have had a pretty amazing time considering that i had a pretty scary surgery one week ago!!
if you are having bothersome symptoms and are scared about the surgery, i say go for it....it hurts for a bit, but after one week i already feel so much better i am glad i went through it!!!!
and if you are in boston, i can't say enough about the staff at BMC from the surgeons to the nurses to the receptionists.....everyone was incredibly kind.
hope this long rant here answers some questions for some. feel free to ask away!! i am so grateful to have had such a positive experience. and heres some pics you can laugh at!!
presurgery markers:
scar:
mushy face:
not so bad!!:
