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Author Topic: EJTampa (Ernie's) updates  (Read 57092 times)

Syl

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Re: EJTampa (Ernie's) updates
« Reply #195 on: April 15, 2009, 09:04:35 am »
Ernie:
 Its great to see you had a great 1st day back at work. Don't overdo it & take alot of breaks.

Syl
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1.5cm AN rt side; Retrosig June 16, 2008; preserved facial and hearing nerves;
FINALLY FREE OF CHRONIC HEADACHES 4.5 years post-op!!!!!!!
Drs. Kato, Blumenfeld, and Cheung.

Keri

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Re: EJTampa (Ernie's) updates
« Reply #196 on: April 15, 2009, 10:53:30 pm »
Hi Ernie,
Don't feel bad about putting your comments on how your tinnitus went crazy at work. It doens't mean your being negative or ungrateful. You're always upbeat and looking at the optimistic side of things. I'd rather hear about how you really felt and some of the struggles than just a pat "everything's great!" answer. And you're real supportive to the people that have major struggles as well.
Glad you're back at work!
Keri
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1.5 left side; hearing loss; translab scheduled for 1/29/09 at Univ of MD at Baltimore
My head feels weird!!

EJTampa

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Re: EJTampa (Ernie's) updates
« Reply #197 on: April 17, 2009, 07:52:39 am »
Hey Gang!
 
Yesterday was my 6 week anniversary.  Can you believe it's been 6 weeks?  Wow!
 
I worked 3 days so far, and start my next 6 shifts tonight at 10 PM.  This will be the real test.  The good thing is that there won't be much traffic in either direction, so driving should not be too much of an issue.
 
Home life is almost back to normal.  Tinnitus and SSD remain my biggest obstacles, but I can cope.  Light headedness still gets me when turning my head or even an up and down motion.
 
As for my accomplishments so far from 2 weeks ago... I have returned to work.  I mowed, edged, and weed-whacked the yard.  Picked up leaves, and did some weeding.  So yeah, pretty much back to normal.  I guess my AN vacation is over :).
 
My next appointment is not until May 18th.  I'm sure the docs will be happy with my progress.
 
Thanks again to all of you here on the forums.  You sure make this journey easier for people and really do "make a difference" in our lives.
 
Ernie
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-1.3 X 0.8 cm AN in the right cerebellopontine angle extending into the internal auditory canal.
-Retrosigmoid Surgery with Dr. Bartels and Dr. Danner at Tampa General 3/5/2009.
-Had to cut hearing nerve to get "sticky" tumor, so SSD right side.

NancyMc

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Re: EJTampa (Ernie's) updates
« Reply #198 on: April 17, 2009, 07:54:36 am »
Wow!  You're amazing.  Now get up here and do my yard work!
Logged
Watch and Wait since 9/19/01
Increased from 1.1 x 1.9 to 1.9 x 1.9 cm as of 10/27/08
Right SSD, tinnitus, compensating balance
Dr. McKenna at Mass Eye and Ear and Dr. Barker at MGH
Translab April 8, 9 hours, 18 mm Tumor all gone SSD some facial weakness

leapyrtwins

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Re: EJTampa (Ernie's) updates
« Reply #199 on: April 17, 2009, 11:18:51 am »
Quote from: EJTampa on April 17, 2009, 07:52:39 am
Hey Gang!
 
Yesterday was my 6 week anniversary.  Can you believe it's been 6 weeks?  Wow!
 

Seriously?  Seems like yesterday - at least to me  ;)  You're doing great for only 6 weeks out.  Keep up the good work.

Jan
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Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

tenai98

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Re: EJTampa (Ernie's) updates
« Reply #200 on: April 17, 2009, 12:57:28 pm »
All I can say ia WOW,,,I"M only ten days but each day brings progress...I did Wii balace and managed over 440 steps in 10 mts   MY goal was 80 steps...lol....
Slight diziness when turning but I keeo practicing my blind spot checks and it should get better.
J0 ;D
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14mmX11mmX11mm left ear
TRANSLAB 04/07/09 2cms at time of surgery
Dr. Benoit and Schramm, Ottawa Civic Campus
SSD ,some facial numbness
Baha surgery sept 22/09
residual tumor 13mmX7mmX8mm
2016 new growth.  25mmX21mmX22mm
cyberknife on June 7

Rich56

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Re: EJTampa (Ernie's) updates
« Reply #201 on: April 19, 2009, 10:43:48 pm »
Hi Ernie,

It's been a while, but I do try to stay up on what's going on.

It would have been nice to meet you today at the brunch, but I'm really glad you had a nice visit with your folks.  There's no better medicine than that :)

Sorry to hear about the tinnitus issue, hope it eases up.  And like the others have said, it's not complaining, but rather, sharing.  And although I don't know what it's like, I care just the same.

Your job does sound really cool.

Hey, did you hear that d*** Albert retired and did you ever meet him? (the program thinks I'm swearing, that's too funny, for those of you not familiar with Mr. Albert, his first name is Richard, but they call him d*** on TV :D :D :D

Rich
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SML (Scarlett's) other half, she had - 1.5 cm x 2.5 cm Cystic AN - Right side
Retrosigmoid on 3/18/09 at MGH in Boston, MA. Dr. Barker & Dr. Lee of MGH/MEEI
no facial issues, SSD right side, balance issues to work on.
The AN Calendar is here: http://www.my.calendars.net/AN_Treatments

EJTampa

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Re: EJTampa (Ernie's) updates
« Reply #202 on: April 22, 2009, 02:53:12 am »
Quote from: CWood on April 18, 2009, 01:48:26 pm
Ernie, don't ever think anything is trivial here.  That's what we're all here for one another for...the 'small' things are just as much of a concern as the 'larger' issues.  It's a perspective.

I deal with the tinnitus too PLUS I get these electrical charges when I talk on the phone.  WEIRD!  I haven't had but one person respond about experiencing the same sort of alien like sensations, but it's at least one so therefor I know I'm not totally loosing it.  Nonetheless, sounds like you're doing very well.  YAAA!   ;D

Cheri

p.s. Going through a sort of 'mourning' I suppose for the loss of hearing in my one ear.  Guess since I 'made it through', it's becoming a bit more of a reality check.  I'm like you though..I'm not complaining, just trying to face the issues.  I suppose this is just all a "process"....before AND after!  Forever...probably.  But that's OK too.

Hi Cheri!  Getting to a couple of posts now under my own update thread :).  Now that I'm working, I find it harder to respond to all the posts, but I'm gonna keep trying!  What is the electrical charge like?  When I hear sound in my good ear, I get a reaction in my bad ear.  It's not really an electrical charge, but more of an echo of what I heard, but in static noise instead.  Even typing right now, each letter I press, I get the echo.  Very annoying.
 
Some of my hearing in the AN ear has returned.  Not enough to be useful, and in fact, not enough to help me with directionality, but it's there.  I put headphones on and shut off my good side.  Then I used a program where I talk, then it plays back.  Yep, I can hear, but it's really low and muffled.  We'll see what's left when I go to the docs on May 18th.
 
Ernie
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-1.3 X 0.8 cm AN in the right cerebellopontine angle extending into the internal auditory canal.
-Retrosigmoid Surgery with Dr. Bartels and Dr. Danner at Tampa General 3/5/2009.
-Had to cut hearing nerve to get "sticky" tumor, so SSD right side.

EJTampa

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Re: EJTampa (Ernie's) updates
« Reply #203 on: April 22, 2009, 02:57:34 am »
Hi Rich!  I wish I could have made it to the brunch too, but the timing didn't work out for us.  I'm going to set a winter one up here in Florida :).
 
I never met Mr. Albert "can't use his first name :)" but I watched him on TV all the time.  Hard to believe he's retired now!  I must be getting pretty old :).  I don't get much TV time, just when tropical cyclones threaten and the news crews come out to film.  We get a bit of radio play during unusual weather events, and tons of newspaper coverage.
 
Ernie
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-1.3 X 0.8 cm AN in the right cerebellopontine angle extending into the internal auditory canal.
-Retrosigmoid Surgery with Dr. Bartels and Dr. Danner at Tampa General 3/5/2009.
-Had to cut hearing nerve to get "sticky" tumor, so SSD right side.

tenai98

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Re: EJTampa (Ernie's) updates
« Reply #204 on: April 22, 2009, 05:11:46 am »
Ernie
If you have the winter brunch in March I"ll be there as I'll be in ST-Augustine again for the month.....
JO ;D
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14mmX11mmX11mm left ear
TRANSLAB 04/07/09 2cms at time of surgery
Dr. Benoit and Schramm, Ottawa Civic Campus
SSD ,some facial numbness
Baha surgery sept 22/09
residual tumor 13mmX7mmX8mm
2016 new growth.  25mmX21mmX22mm
cyberknife on June 7

moe

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Re: EJTampa (Ernie's) updates
« Reply #205 on: April 22, 2009, 09:34:21 am »
That's actually good news, Ernie, that you have a little hearing in your AN ear! Maybe there is hope to dull the tinnitus with just a little bit of hearing, and hopefully your hearing will slowly improve.
Finger's crossed :)
Maureen
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06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

NancyMc

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Re: EJTampa (Ernie's) updates
« Reply #206 on: April 22, 2009, 11:37:26 am »
Oh!  The light bulb went off!  That's why my tinnitus is worse.  Dr. McKenna explained tinnitus to me (See Spa Day thread for Monday.), but I didn't follow through with the conclusion that I must have had some hearing left in my AN ear, and when the nerve was cut, my brain had to fill the void of entire hearing loss.
Brilliant, Maureen!
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Watch and Wait since 9/19/01
Increased from 1.1 x 1.9 to 1.9 x 1.9 cm as of 10/27/08
Right SSD, tinnitus, compensating balance
Dr. McKenna at Mass Eye and Ear and Dr. Barker at MGH
Translab April 8, 9 hours, 18 mm Tumor all gone SSD some facial weakness

Kathy M

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Re: EJTampa (Ernie's) updates
« Reply #207 on: April 22, 2009, 12:52:17 pm »
Wow, Ernie!  I am just reading about your recent return to work and am so impressed with how quickly you have sailed through your r4ecovery.  You've had your surgery and recovery while I've been on medical leave and I'm still not back.  Good for you!  I'm due to go back in a few weeks and I'm looking forward to it.  I hope your tinnitus improves - funny how that SSD ear causes so much turmoil with noises. 

Continued healing, Ernie, and you are an inspiration to many of us whose recoveries have plodded along more slowly!

Kathy
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AN diagnosed 11/14/08, 3+cm, Retrosigmoid 1/13/09, Univ. Hosp., Cincinnati, Drs. Tew and Pensak
no facial nerve or eye issues!
3 more surgeries related to staph infections & osteomylitis over next 13 months.  New diagnosis of breast cancer.  Treatment completed 08/27/10.  Moving on!!!

EJTampa

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Re: EJTampa (Ernie's) updates
« Reply #208 on: April 23, 2009, 03:50:37 am »
First, thanks Kathy!  I'm glad to hear that you will be able to return to work in a few weeks.  That means progress is happening!
 
Now an update!  Today makes 7 weeks post-op!  This morning I am finishing up my last graveyard shift (10 PM to 6 AM) of 6 in a row!  I made it through!  I had trouble on the first two with lots of sneezing (I'm allergic to work) and just getting used to not sleeping at night.  By the third shift, I was back in the groove!  I now have a few days off to get back out of the groove :).
 
The tinnitus is as bad as ever, maybe worse.  I don't know why it's getting so bad.  Probably the stress of returning to work and the change in my daily schedule.
 
I'm still trying to walk often, but working nights and sleeping days makes it tougher.  It's in the 80s by the time I wake up, and just too uncomfortable for a long walk.  I have been walking every other day for an hour, just to keep myself in the habit.
 
We may try camping out this weekend.  I'd love to see what a lot of peace and quiet can do for my tinnitus.  Heck, I have all the sounds of nature right inside my head already, so it won't matter if the bugs make noise or not :).
 
Time to sign off and head home and get some sleep. :)
 
Ernie
 
Mini update:  It was right around 50 degrees when I got home this morning so went out and did a 45 minute walk.  So relieved to get that done when it was cool!  Now it's time for some sleep.  :)
« Last Edit: April 23, 2009, 05:45:29 am by EJTampa »
Logged
-1.3 X 0.8 cm AN in the right cerebellopontine angle extending into the internal auditory canal.
-Retrosigmoid Surgery with Dr. Bartels and Dr. Danner at Tampa General 3/5/2009.
-Had to cut hearing nerve to get "sticky" tumor, so SSD right side.

NancyMc

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Re: EJTampa (Ernie's) updates
« Reply #209 on: April 23, 2009, 05:56:40 am »
Good for you, Ernie!  Your life is back.
I'm battling with increased tinnitus as well.  I live in the middle of nowhere, and the cicadas are ever present in my head.  This I attribute to the cutting of the acoustic nerve and wonder if it might have been possible to have preserved the connection to have avoided the amplification.  But I'm just going to accept it as my new white noise and not let it cramp my style.
I've ordered my surgery transcript (from the infamous Mili who will have to be called three or four times before she ever actually mails it) for a play-by-play of the surgery.  Should be a good read.  Do you have yours?
Nancy
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Watch and Wait since 9/19/01
Increased from 1.1 x 1.9 to 1.9 x 1.9 cm as of 10/27/08
Right SSD, tinnitus, compensating balance
Dr. McKenna at Mass Eye and Ear and Dr. Barker at MGH
Translab April 8, 9 hours, 18 mm Tumor all gone SSD some facial weakness
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