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Author Topic: EJTampa (Ernie's) updates  (Read 60681 times)

EJTampa

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Re: EJTampa (Ernie's) updates
« Reply #90 on: March 13, 2009, 07:45:42 am »
Hi JO!
 
I'm glad my posts have been helpful to you!  That is what I really want.  I've been told that many (not all) that have few post-op complications, go on with their lives and leave the AN forums.  I'm sure that will happen to me one day as well, but I at least want people to see that there are "good" outcomes with fairly quick recoveries too.  I undersand it is much more likely for someone with continued problems to stay and use this venue for support...it only makes sense.
 
And in that, I will continue to post my daily (hopefully) updateds here :).  It will eventually become a milestones only update, but I figure I should at least take it through my first post-op appointment next week!
 
More pictures should be coming soon.
 
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.

allegro17

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Re: EJTampa (Ernie's) updates
« Reply #91 on: March 13, 2009, 10:00:11 am »
Hi Ernie!

Sorry to post so late, but I have been following along and just wanted to say congratulations on such a successful outcome and recovery thus far!

I think you really demonstrate the value of staying positive to all of us.  From the beginning your spirit has been unsinkable and I think that has probably made a world of difference in how far you've come so quickly!

I always look forward to reading your posts so keep 'em coming :)

Best,

Laura
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Jim Scott

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Re: EJTampa (Ernie's) updates
« Reply #92 on: March 13, 2009, 12:37:29 pm »
Ernie ~

I support your contention that those with good outcomes like yours - whether their AN treatment was surgical, radiation or both - do other AN patients a service by posting their positive results.  It certainly isn't bragging or gloating, but simply sharing good news - and that is never something anyone need apologize for.  Newly diagnosed AN patients need to see that every case doesn't end with complications and long-running problems.  We stand in full support of any AN patient with issues and/or questions we can address but I believe we also stand in support of those who experience good outcomes and recoveries.  I'm glad you're one of those.  May your recovery continue apace and may you post as long as you feel you have something to add, even if that is simply to serve as an example to others that an AN diagnosis isn't the end of the world.  Not a walk in the park - definitely a challenge both physically and emotionally - but not necessarily always with a negative outcome.

Jim
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4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

EJTampa

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Re: EJTampa (Ernie's) updates
« Reply #93 on: March 13, 2009, 09:13:08 pm »
Thanks Jim.  I couldn't have done half of this without all of you, and my great surgical team, of course.  I just saw the note on the calendar for March 6th about my return home, I didn't do that :)
 
Day 9 - Friday March the 13th! - Better than the 12th.  Woke with a bit of pain after the overnight dose wore off, but didn't need more meds for the day.  Will take one at bed again tonight, seemed to help my sleep some.  We had a bit of a long ride today (no, I didn't drive), and my head was all over the place.  Maybe because someone else is in control of direction?  I dunno, but wow :).  On the way back, I closed my eyes and caught a couple of z's and had two strange "snaps" in the surgical area.  Just nerves doing their thing, I'm sure.  Brief potent jolt of pain, but so brief, not more than a nuicance.  Overall, I might rate this my best so far.  Still taking the steroids, about 2 weeks left with the tapering dosage schedule I think.
 
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 #94 on: March 14, 2009, 12:27:14 pm »
JO,
When you said three weeks, I jumped.  I had just told someone my surgery is in four weeks, and it's the day after yours.  I need all that time to get ready, so please, at least say three and a half weeks!   ::) (just kidding)

Ernie,
Your reports are EXTREMELY helpful to me.  I copy and paste them into emails to my future caregiver so that he will know what to expect.  Thank you so very much.  And keep up the good work on progressing toward your best recovery, whatever that may ultimately be.

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

MAlegant

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Re: EJTampa (Ernie's) updates
« Reply #95 on: March 14, 2009, 12:33:37 pm »
Ernie,
Sounds like you are right on track with those meds.  I'm glad your pain is better.  Your attitude is undeniably stellar.
M
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3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.

EJTampa

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Re: EJTampa (Ernie's) updates
« Reply #96 on: March 14, 2009, 06:34:51 pm »
Quote from: lori67 on March 08, 2009, 10:39:59 am
Cheri, I was thinking the same thing - Ernie should have made a Superman cape out of the scarf!!  Maybe we should have Steve knit a big "S"to put on it!

Lori

Ok, This is for Cheri and Lori, and against my better judgement :)
 

 

 
 
I know I'm going to be sorry :)
 
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.

Kaybo

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Re: EJTampa (Ernie's) updates
« Reply #97 on: March 14, 2009, 06:42:09 pm »
that is one LONG scarf!! ;D

K
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Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

leapyrtwins

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Re: EJTampa (Ernie's) updates
« Reply #98 on: March 14, 2009, 06:50:29 pm »
Ernie -

IMO you are going to be sorry.  Now that you've given in to Cheri and Lori, God only knows what other things they'll be asking you to do  :o

Glad to see you're doing so well.

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

lori67

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Re: EJTampa (Ernie's) updates
« Reply #99 on: March 14, 2009, 07:37:46 pm »
IT'S A BIRD.... IT'S A PLANE......NAH.....IT'S JUST ERNIE ON THE TREADMILL!!!!   :D

And I think you've found a good incentive to keep moving on that treadmill - putting the dartboard right next to it - does your wife play darts while you're walking?   :o

You are lookin' great and I'm sure by next week you'll be able to walk around tall buildings in a single outing.  Hey, even Superman has to recover from brain surgery, you know.   ;)

See, that wasn't too bad...can't wait to see what Cheri has to say...

Lori
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Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

sgerrard

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Re: EJTampa (Ernie's) updates
« Reply #100 on: March 14, 2009, 09:07:01 pm »
Ernie, step away from the scarf!   :o

Sorry, man, but it is really time to send the scarf on to the next person.

Liz (EStacey07) has a 4.5 cm AN coming out on the 25th; there is also Anissa coming up April 1, and Nancy on April 8. Just pick somebody and get that thing in the mail!  :D

Steve
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8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

EJTampa

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Re: EJTampa (Ernie's) updates
« Reply #101 on: March 14, 2009, 09:24:08 pm »
Hi Steve,
 
I am not hoarding the scarf! :).  It should get to Scarlett (SML) either the day before or day of surgery.  I hope the day before, but either way it will be there from surgery day on through her recovery.  Enjoy the scarf Scarlett!
 
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.

sgerrard

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Re: EJTampa (Ernie's) updates
« Reply #102 on: March 14, 2009, 09:27:46 pm »
Excellent. Phew! You had me worried there for a minute...  ;D

Steve
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8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

EJTampa

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Re: EJTampa (Ernie's) updates
« Reply #103 on: March 14, 2009, 09:31:48 pm »
Day 10 - Saturday March 14th.  Another good day.  Slept in a little (until 9 AM), but bed is still something I look forward to escaping from as sleeping sitting up just doesn't feel right to me.  We went to church today, and the music filled my SSD ear with tinnitus like you couldn't believe.  I know that will settle with time, but wow :).  Riding in a car is still making me feel very light headed, so I think I'll stay away from the wheel for some time to come.  Even a swerve sends my senses into overload.  Thanks to many of you, I know this is normal and will improve with time.
 
We did take our two walks today, but the first one was later, around noon, and it was hot outside.  It feels much better to walk early in the morning.  Our evening walk was quite nice.
 
No change with medications.  I will take a pain pill before bed tonight.  I may even switch to just straight tylenol soon, but for now I'm enjoying the drowsiness associated with the percocet, as it helps me sleep while stuck in "reading" position.
 
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 #104 on: March 15, 2009, 06:08:11 am »
Just curious . . .
For how long are we expected to sleep sitting up?  Or is related to our tendency to headache post-op?
Thank you for the continued vicarious experience.
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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