recently we’ve been swamped with prep work for will’s upcoming surgery. we’ve consumed every waking minute with thinking about things that need to get done prior to the surgery, worrying about the surgery and its aftermath, or trying to occupy ourselves with things so we will not think about it at all.
if you are scratching your head asking “what surgery”? then let me throw this car in reverse. (beep, beep, beep, beep – that is my back up noise.)
will’s been experiencing back pain for about a year now. at first we blamed it on our 13 year old bed, then we would blame it on how he sat in bed till 3am working hunched over a lap top, then we blamed it on too much yard work, and then finally in january he got to the point where he was having trouble getting out of bed and we figured he better go get things checked out. he went and saw our primary care dr. who had him get an mri. he had the mri done and then waited for a few weeks for the results. when he got the results from our primary doctor she told him he had bulging discs and then scared us with some crazy terms like “chiari malformation”, but quickly went on to tell us that lots of people have that, and there was “nothing to worry about”. she said what concerned her more was a pocket of fluid on the spine. she referred us to a neurosurgeon.
i am not sure why the referral did not scare me, or why i did not really think too much about it when she said the word “neu-ro-sur-geon”. well, we went on about our lives, will in pain and me in a fog and waited for the doctor to call us back with an appointment. after a month of no action will called back and lit a fire and got an appointment. we went into the appointment armed with a notepad full of questions. we were ready with all of these:
- can he get acupuncture?
- can he go to the chiropractor?
- what about a doctor of osteopath?
- will massage help him?
- is there any homeopathic medicine he can take?
our appointment took forever and we were delayed about 3 hours before we actually got to see the neurosurgeon. when we did see him he had not received will’s mri and could not confirm or really tell us much of anything. however, in the brief 5 minute period he did spend with us he informed us that he could simply cut into the back of will’s skull to make a larger opening for the cerebellar tonsils and then the fluid would flow more freely and we’d be all set. well, then, if it was that simple let’s just get right to it! omg! the freak out began. we just closed up our little notebook of questions, and went home.
we got in the car and looked at each other like all of the wind was let out of our sails. i kept trying to convince will that the doctor had not seen his mri and he really did not know if that was what will needed or not. all the while this was helping me to not lose it. we called family and friends and i went into full on investigation mode. you would have totally called me “baby” from criminal minds. my google fingers were fast and furious. we learned what chiari malformation was, and also figured out the big word the neurosurgeon used that we’d never heard before – syringomyelia. we dug and unfortunately found out that the doctor was 100% spot on. this was exactly what will needed – a posterior fossa decompression surgery.
since that appointment we’ve schooled ourselves on this, will’s had further mri testing, been to another neurosurgeon, and met again with our first neurosurgeon and decided to have this surgery on the 27th of april at duke university hospital. the surgery is called a lower skull base surgery and basically enlarges the opening at the base of the skull to allow the cerebellar tonsils to hang as they may, while still allowing the spinal fluid to more freely circulate, thus eventually alleviating the syringomyelia and relieving the back pain. the surgery will have will in the icu for 24 hours and then in the hospital for the remainder of the week. when he comes home he will be on bed rest and on heavy pain medication. we’ve got lori flying in to be our chiari support staff.
however, hopefully in about a month’s time will can start to notice a decrease in his back pain and will hopefully be fully healed from his surgery. doctors advise that he keep things low for 60 days post op, and our only major upcoming plans after his surgery are a trip to corolla in september.
so right now is a time of being busy bees – to distract, while at the same time totally focusing on what is happening. it’s the strangest predicament. last friday we went to art after hours and listened to live music on a 1950’s swinging glider rocker outside of the sunflower studios. we just rested our heads on each other’s shoulders and sipped our coffees while we listened to the words of the songs and watched the stars in the sky. both of us are nervous and scared, but we know we are doing what’s best, what’s preventative, and what’s got to be done before his condition gets any worse.
You must be logged in to post a comment.