ANA Discussion Forum
General Category => AN Issues => Topic started by: neuroma_racer on March 29, 2010, 08:41:07 am
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howdy all, lo-pro lately.
met dr john mcelveen, from raleigh, on jan 20th.
he does about 50 ANs a year.
(roughly half are trans lab, about 15 posterior fossa, and about 10 middle fossa)
all looks/sounds/FEELS "right"
we scheduled a middle fossa approach.
in addition, a Dr Hitzelberger is flying in from LA to assist.
they do this 3-4 times a year.
there will actually be two neurosurgeons, and two otologists
he is anticipating about a 5-6 hour operation.
dr cunninghamm, (dr mcelveen's otology partner at carolina ear, in raleigh) ALSO trained at HEI.
based on my video nystagmography and ABRs,
my AN seems to localize to the INFERIOR branch of the vestibular nerve.
as such, this places it nearer the auditory/hearing nerve fibers, which somewhat diminishes chances of hearing preservation.
overall, he is rating the chances of a facial nerve palsy at about 5-10%, and about 50/50 on hearing preservation.
my hope and expectation is that : this represents a degree of "hanging crepe" or managing expectations, (i.e. UNDERpromising, in the hopes of OVERdelivering).
essentially no PERCEPTIBLE changes in hearing loss,
essentially no changes in tinnitus, but it does still wax/wane a little.
i HAVE fallen twice
---once i may should have been able to recover balance and not fall, had it not been for the AN.
---the second fall, i simply forgot i was still standing on the bottom step of the stoop, and took off to walk across the garage, . . . but the garage was 12" below me. - - - sprained both ankles, (8 days ago) so i am still a little gimped up from this, but mostly recovered)
after april 5th, i have the rest of the month off, and ALL of may off.
it sounds like it is all IN network for blue cross/blue shield,
so that works out GREAT.
sister arrives night of the 5th, and stays through the 14th, to keep the kids
i hope to be home on the 12th or 13th,
not really nervous, yet
i AM, however, kinda worried about sleeping, afterwards.
working in the e.r., and swinging from stretches of day shifts, to stretches of night shifts, . . .
i on rare occasions in the past, have used ambien (or sonata) to help me sleep, and switch from one circadian rhythm to another.
i have found that i sleep well, for the 1, or 2, or 3 days i use them,
but then the first and second night, after discontinuing them, i can't sleep for anything.
i know that benzo's such as these sleeping aids, (as well as nerve pills in general) are pretty habit forming (god knows i see enough people coming into the e.r. fiending for them, as some M.D. has aided them in becoming addicted.)
it has been >12-18 months since i have used one, just because i hate not being able to sleep after stopping them, and have found behavioral ways (mainly shift scheduling techniques) to help me convert from nights to days
so i hate the idea of using them, even if briefly
my wife, a physical therapist of 13+years experience) says "don't worry, you're gonna feel like crap, you're gonna need to sleep, just use em (if needed) and worry about sleepless nights off them, later
that is what i will probably do,
silly, perhaps . . .
but that is really my biggest worry right now
overall, i have a really good feeling,
and am anticipating/expecting a really good outcome.
not really sure just how poorly i should expect to feel when i wake up.
or how quickly i will bounce back.
i have lost 30 lbs, so there'll be a little less fat for the anesthesia to soak into, and linger around in.
thoughts, and advice welcome.
thanks for reading the ramble,
if you are still here.
jesse
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Jesse, Has to be a big relief to have a date set and know will be over with soon. Your sleep issue may depend if your dr has the protocol of having pts on oral steroids once home. I am the NF2 and 4 surgeries and only was on them my last time due to issues I had had with some swelling. I had trouble sleeping every surgery even with the no steroids. I had been on IV ones while in hospital. Just never slept well for at least 2 weeks every time. Of course had the daytime naps for quite a while too. I was in 2 beds and the chair every night. I never did try any sleeping pill. Think bought a new pillow every time too and had a pile of them nearby so could change as felt the need. Was always such a relief when nights were easier. I have heard of some who sleep well fairly soon here so like the rest of this whole AN experience, time will tell!
I wish you well! Cheryl R
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I think that this, as with all other aspects of AN's - varies from patient to patient. You might be so tired and your body so exhausted that sleep will not even be a problem. I know that anesthesia always does a number on me & it takes a good week for it to get out of my system and get back to "sleeping" again. However, I don't remember that with my AN surgery. Of course, I had so many things that I really don't remember much of it!
We will be praying for you & your family!
K ;D
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there will actually be two neurosurgeons, and two otologists
he is anticipating about a 5-6 hour operation.
Wow! Sounds expensive. I only had two docs (neurotologist and neurosurgeon) - three if you count the anesthesiologist - and 7 1/2 hours of surgery plus the hospital stay; cost my insurance company over $100,000. Hope you have good insurance coverage ;)
Best of luck. April 8th will be here before you know it.
I'm confident you'll be just fine; you're in good hands.
Jan
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Hi, Jesse, good to hear from you! Sounds like you have everything squared away and are set to go next week - sure you'll do great with that awesome team you've put together! I had trouble sleeping while still on the post surgery steroids - ambien did not help me a bit, but once off the steroids, I slept fine.
We'll be looking for an update to see how things go on the 8th if your wife wouldn't mind just checking in briefly with us :)
Cindy
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Jesse ~
Congratulations on settling on a medical team and a date! Time will 'fly' until April 8th but you appear to have the situation well in hand so I'll wish you nothing but a successful, uncomplicated Middle Fossa surgery - and I'll add your date to our AN Treatment calendar - http://my.calendars.net/an_treatments/d08/04/2010?authenticate=&display=M&style=B (http://my.calendars.net/an_treatments/d08/04/2010?authenticate=&display=M&style=B). Feel free to edit as you may deem necessary.
Jim
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Jesse,
Congrats on all the details,and getting all your duckies in a row. Doesn't it feel good?
Now leave the rest up to the fantastic surgeons, and see how things go.
No use wondering about what you "might" need "in case" you can't sleep.
When you get home, might be the time that you may need something at night.Small dose of Trazodone helps me sleep if needed.
As your wife said:
"don't worry, you're gonna feel like crap, you're gonna need to sleep, just use em (if needed) and worry about sleepless nights off them, later
Amen sister!
Take it as it comes. :)
Maureen
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Hi Jesse, just want to wish you luck on your surgery. Keep up the great attitude and you will be fine. Expect ups and downs like everything else in life, but know that we are all thinking of you. :)
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I have kept up with your postings because we both started posting about the same time. My surgery was March 24. I went home in three days. Glad to hear you are losing some weight. The surgical nurses thought during the surgery that I was about 40 years old...I'm 60. My excellent physical health was the key in my early release. Exercise, exercise, exercise, and eat the right food. In the long run it will do you a lot of good...make you a better race car driver. Mark Martin in NASCAR is the oldest driver there, I think, but his reputation is that his physical condition far surpasses any other driver out there. Your recovery will much faster.
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Jesse,
Congrats on picking the treatment and date.. That's one of the biggest parts of the AN journey, and often the hardest. I'm with others and don't worry about being able to sleep after surgery. I have a feeling that won't be a problem. Immediately after, as I'm sure you've heard, you'll feel like you've been hit by a mack truck but it fairly quickly gets better after that.. Sometimes, healing comes slowly but surely.. Eyes on the prize, my friend... Eyes on the prize...
Bummer about the falls... I'm sure those were no fun. Congrats on the weight loss. You're right in that the better shape you can get into before surgery the better off you'll be. That's generally true overall, but especially with surgery.
Regards,
Brian
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I sleep on my stomach and of course I sleep on the side of my surgery. My surgery was the 24th of March, and I slept on my back for a few nights, but I was so tired you could have put me in a closet and I would have slept.
I have been using a buck wheat hull pillow for about 10 years, just because they are so darn comfortable. They are not at all like a conventional pillow...it really is a sleeping device...you can't find a pilllow case to fit...you can't use it to make the bed, they are heavy, and some what noisy at first...but you will never use another pillow again if you try this. Also these things are very inexpensive and you can find them on Amazon and there are lots of reviews on them.
You can shape this pillow to any position, to any thickness. It becomes like riding a bicycle...once you learn how to do it, you just do it without a 2nd thought. I bunch my pillow into the right thickness, and use my fist to drill a hole where my ear is going, and I can rest there with no pressure on my surgery area. My pillow had too many hulls in it so I removed a bunch and stored them in a zip lock bag, and will add them back in as the hulls wear in.
My timing is off, and if I moved to Iceland I could fit right in time wise, but I live in Texas so I enjoy my quiet time in the morning.
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Hi Jesse.
it sounds like it is all IN network for blue cross/blue shield,
so that works out GREAT.
I had BC/BS as well, federal version though. They paid about 130,000 total for my surgery, but I think after all was set in done I paid about 1,000 out of pocket.
i hope to be home on the 12th or 13th,
That should be easy enough. My doctor (Bartels in Tampa) told me to get out of the hospital as fast as I can after the surgery. I went home the day after.
i AM, however, kinda worried about sleeping, afterwards.
working in the e.r., and swinging from stretches of day shifts, to stretches of night shifts, . . .
i on rare occasions in the past, have used ambien (or sonata) to help me sleep, and switch from one circadian rhythm to another.
i have found that i sleep well, for the 1, or 2, or 3 days i use them,
but then the first and second night, after discontinuing them, i can't sleep for anything.
I am also a shift worker, rotating between days, swings and mids. I feel your pain. I did not get as tired after the surgery as some of the other folks here did, but also didn't have huge issues with sleep. The steroids will interfere with sleep some, but you may not "feel" like you are losing sleep. I started doing a lot of walking during the mornings and/or evenings just a couple days after surgery, and that helped wear me out by nighttime.
not really sure just how poorly i should expect to feel when i wake up.
or how quickly i will bounce back.
i have lost 30 lbs, so there'll be a little less fat for the anesthesia to soak into, and linger around in.
When I first woke up, I was really grumpy/cranky. I had a bit of "morning sickness" when coming off the anesthesia :). Otherwise, I did quite well and was eating tuna subs for lunch the day after surgery. Everyone recovers differently, but I think if you go in with a positive attitude like yours, it helps in the recovery a lot!
I see you're surgery is in 3 days, so are you getting nervous yet? :). I never did feel very nervous. The pre-op stuff went so fast that morning, I never had time to think much about it.
You're gonna do great!
Ernie
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Hi Jesse,
Good luck with your surgery and you are in our thoughts and prayers. I had mine 3 plus weeks ago and all went well.
Blandine
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Good luck with your sugery we're pulling for you! Let us know how everything turns out 8)
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Just want to wish you luck on your upcoming surgery. Take a couple of deep breaths and it will be over before you know it :)
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thanks, all
i feel really good,
and somehow really feel at my core everything is gonna be just fine
not nervous,
somehow,
in 2005, i managed to win a seat in the 'world series of poker', main event, (no-limit texas hold'em)
which is a $10,000 entry, all from a $25 local charity poker tournament, which i eventually won, (beating 81 other folks)
the world series was LIGHT YEARS beyond anything in which i had ever competed before.
somehow, i only felt nervous for about 5 minutes at breakfast, the morning of my first day of play.
alas, i was unfortunately knocked out after 11.5 hours of play,
however i had two name-brand pro's (hoyt corkins, and one of the asian pro's : minh something-or-other) at my table the WHOLE DAY, as well as teh eventual 14th place finisher (out of about 6,000 entrants)
anyways,
time for a few winks, then up b4 the sun to raleigh
we had intended to leave tonight, but life got in the way,
no worries,
more later
aces,
jesse
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Best to you tomorrow...I will pray for you :) ...michelle d.
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Jesse .....
Thoughts and prayers for your surgery tomorrow. You will do well, I know!
Hope someone will post for you to let us know how it went.
Clarice