this blog is about my observations after i had a stroke that left me unable to walk, use my left side, talk clearly, and other things that i will get into in subsequent entries. this is a whole new world for me, having been on this planet with everything working sixty-something years.
i was a healthy fifty nine year old when i had searing, throbbing pain at the base of my skull every time i laughed heartily and couldn’t lift my head without pain when i leaned over a pool table to take a shot. i also got tunnel vision walking down a hallway and my legs felt uncoordinated walking across any expanse or down stairs.
of course, i went to a doctor right away (a clinic that i had never been to) and he sent me for neck massages.
i was still having pain and felt that something was not quite right, so i went to another doctor who had a good reputation.
this doctor xrayed me and sent me to have an mri of my neck. she didn’t find anything significant-only a little arthritis in my neck.
to rule out ms, she then sent me for an mri of my head. this is when the meningioma was incidentally found.
my doctor said “it’s large and wrapped around your brainstem”.
later i learned these are called dural tails.
i asked if she would have any recommendations for where i could get treatment. she said cornel. i tried to find their website, and found out that they had merged with columbia. every time i searched, i was dumped off at columbia’s website.
about this same time, my brother’s mother-in-law had a meningioma diagnosis, too, and recommended her surgeon at yale, dr. piepmeyer. i don’t know for sure, but i suspect her meningioma was a “convex” one that’s just under the skull and therefore “easier” to access.
‘ sent my mris to him. he also sent me for a cat scan to get a better picture of the vascularity feeding the growth.
i went to see him. now, i was of a mind, and still am, that a surgeon’s first thought is that the solution to a problem is cutting. he recommended surgery, but my hearing on the right would have to be “dismantled”. he told me to an otolaryngologist would do this on my hearing during the surgery and he would do the rest. i asked him for other surgeons that would be qualified to do the surgery, and he gave me two names- dr. bruce at colombia in nyc and dr. al-mefty at brigham and women’s in boston. he said bruce would probably not take my insurance, and al-mefty would.
i wasn’t happy with that approach (after all, who wants their hearing destroyed?) i wanted to get two other opinions.
a friend told me her cousin was the president of columbia and to drop his name to get an appointment right away. it was about a year later that i got an appointment with dr. al-mefty.
i took my mris and cat scan to dr. bruce, who said it was complicated, but he could remove it in a 6 hour surgery. since i was freaking out i wanted calmer ears to record what he had to say, i had two consultations- one in which i had my mother and aunt with me, and one that i asked my father accompany me to.
at the consultation with al-mefty, he said he would do all the “bony work” in one operation, the next day do the actual removal, and put me under sedation until then. since i didn’t relish the thought of having my skull open all night, going from awake to anesthesia to sedation then back to anesthesia, (and i had heard that under sedation you can feel everything, just can’t move) i declined and went with the other surgical approach that 1. doesn’t destroy my hearing, 2. is accomplished in a reasonable amount of time, 3. doesn’t expose me to the dangers of anesthesia-sedation-anesthesia and 4. takes place in a more familiar location.
next time “it’s the little things”.