howdy all,
please excuse my long-windedness.
first, thanks for this forum. i have been noodling around here, this evening, and have come across a lot of good food for thought. this is a really well-laid-out forum, as far as topic/sub-forums go.
congratulations on a job well done. i look forward to reading and RE-reading much, much more here. everyone here seems to be very supportive of one another, thanks in advance.
a little about my course:
i am 38. (for another month and a half), and have just been diagnosed this tuesday before christmas, after about three weeks of symptoms. i developed a constant tinnitus (mild, i guess), and some mild hearing diminution, friday morning 12/04/09, while readying myself for work that morning.
i saw an ENT M.D. monday, 3 days later. audiology revealed 20 dB hearing loss in the higher frequencies. we tried about a week's worth of prednisone, which was ineffectual. so we then did an MRI with and without contrast, which was positive, as below in my signature.
funny thing is, i kinda new the MRI was positive when i was leaving. i mentioned to the technologist i thought i had moved a millimeter (or two) during one scanning phase, and i was curious if they saw any motion artifact. he replied, "no, we got a diagnostic scan" (not a good phrase to hear), and then as i was about to walk out - he asked when my ENT would get the results, and i responded i would see him the next day, to go over it. so taken together i knew it showed something. i had just worked a 12 hour night shift, preceding the scan, and was too tired to look, or press for details, but in my gut i knew it wasnt good. i am scheduled for ABRs next week, and will undergo ENG in early january, unless there is a cancellation this week.
my ENT is arranging for me to be seen by an otologist, Dr McElveen, from raleigh, n.c. (4 hours away) who comes here to greenville, s.c., once a month, to operate and see patients. not yet sure when in january this will be.
at my request, i will be getting, at a minimum, a 2nd opinion from another otologist, in columbia, s.c. (1.5 hrs away) (Dr Thomas?, i think?)
3rd, 4th, 5th opinions to be sought as needed, i think dr fukushima at duke, (4 hours away, but doesN'T come here) would be next.
a little about me:
i am an emergency medicine physician, this makes me a bit more "connected", and has helped with the expedited course of my workup. while it also gave me a head start on some of the broader details of what i am dealing with, it doesn't make the decisions any easier.
i am a husband of 10 years, and father to a 7, 5, 3 year old. in decent health except for being out of shape / a little overweight.
my passion is grassroots level car racing, into which i have been delving, for the last two years, so i am actually JUST NOW getting to the competition levels. i have about 45 days on track under my belt, in various ford mustangs. and many more laps to go, i hope.
my concerns:
while obviously, i want it all (hearing preservation, facial nerve function, and enough vestibular sense to continue racing) i guess i have to rank-order those 2nd, 1st, and 3rd, in importance, respectively.
my quandries:
lots of what goes through my mind,for now, is just conjecture, based on what i know, have recently read, and learned from my ENT. things will hopefully be much better delineated once i see a couple of otologists.
i was reading
this article from emedicine.com about 5 minutes after listening to the dictation of my MRI, and confirming my suspicions of my diagnosis.
as i was reading the downsides of each of the three different surgical approaches, i thought well, i dont want that one, or THAT one, OR that one either!! -- kinda depressing, as none sound great.
some of my questions:
(1a) to what degree do neurotologists (being sub-sub specialized surgeons, afterall) tend to generally always recommend surgery, instead of radiation?
(1b) conversely, to what degree to radiation types, always recommend gamma knife, or linear accelerator therapy, since that is what THEY do, instead of a scalpel?
(1c) the reason i ask these first, is because the article i cited above, made it seem (like an almost instant reflex) like "radiation isn't for me, i want surgery". the article was written by an ent surgeon, and a neurosurgeon. just wondering to what degree they preach that which they practice?, vs being able to recommend radiation, instead of the operating room, if that is what they really think would be better?
(2)
does SSD (which i see perhaps too frequently in people's signatures, here) stand for?
same sided deafness???
(i hope there is a better explanation for this acronym)
if my ABR is normal, and ENG is ABnormal, then this tends to localize the tumor to the SUPERIOR vestibular nerve, which, since it is further removed from the cochlear nerve, chances of hearing preservation are better.
(3a) so my thought is the sooner i have surgery, the less hearing loss i will incur due to tumor progression, (slow as it my be) right?
and conversely . . .
if my ABR is normal, and ENG is ABnromal, localizing it to the INFERIOR vestibullar nerve, being closer to the cochlear nerve, hearing is more at risk. then
(3b) my thought is since hearing is more likely to get trashed . . . do i wait? postponing surgery as long as possible (?years?), enjoy the hearing (with tinnitus) while it lasts?
(4) does surgery inherently disrupt vestibular input, into the balance/walking/driving equation? are ALL the vestibular nerves on the affected side cut? just some?
(5a) for a middle fossa approach, what is an average "back to full work" time?
as with everything, i realize the answer is "it depends",
my ENT said he thought i'd be in the hospital 3-4 days (1st night in icu), and back to work in the e.r. in 7-10 days.
conversely, i know of an executive, wh0o essentially has a desk job, and he was told 8-10 weeks to go back to work.
in addition to being fast-paced, fatiguing, and very mentally demanding, my work can be pretty physically demanding as well, (suturing, incision and drainages, relocating dislocated joints, applying casts and splints, inserting breathing and occasionally chest tubes, etc.) these are fairly dextrous procedures.
(5b) to what degree does the vestibular defecits after surgery take a toll on dexterity, hand eye coordination? vs just problems with ambulation, position sense, driving?
i typed the above, this afternoon, but hadn't posted it yet, due to wanting to proof-read it.
as a late addition, i have added the below, after a phone call 2 hours ago.
being the impatient type, i phoned a local neurosurgeon acquaintance/friend, as a 'curbside consult'.
to my surprise and delight, when i asked if anyone in his group of 6-7 surgeons worked on these, (my goal was really to just bounce some ideas off of him) . . . he responded that these are HIS specialty.
he is going to look at my scan and i am going to meet with him before his tumor clinic on thursday.
he feels, (without having seen my scan yet), that for this small of an AN, (4mm x 7mm), and based on it being located COMPLETELY in the internal auditory canal, . . . that radiation therapy, or perhaps stereotactic surgery would be the way to go.
he kinda addressed 1a, and (1b) above, indicating that if i spoke to certain dr's they would say i was crazy to consider radiation, and that i should get it cut out. he, himself is involved with the radiotherapies, and stereotactic surgeries here, . . . and seems to think i'd be crazy to undergo the surgical risks, for such a small benign tumor.
i feel totally adrift, right now. i am reading as much as i can. it seems every time i talk to someone new, or read something else, i feel new ups and downs. as a physician, i know there is little black and white, everything is shades of gray. everything has pro's and con's, everything "depends", and none of us have a crystal ball.
i am a pretty empathetic type, with my patients. it is weird being on this side of the diagnosis, as objectivity is diminished.
it has been something of an emotional roller coaster, this week. it also seems difficult at times to keep perspective, it isn't cancer after all. worst case scenario is that i go deaf in one ear, have a facial palsy, sell my race car, and get a new hobby.
i think i am probably really starting to ramble now, so if anyone is still there, thanks for sticking with me, through this stream of consciousness.
jesse
