Author Topic: EJTampa (Ernie's) updates  (Read 56783 times)

Jim Scott

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Re: EJTampa (Ernie's) updates
« Reply #225 on: February 25, 2010, 02:07:11 pm »
Hey, Ernie!

Thanks for the belated update and it's good news.  I'm glad to learn that your one-year surgery anniversary is going to find you in good shape.  I recall that your hospital stay was so short that you were able to have your wife wait in the car and drive you home, or something close to it.  ;) 

I'm glad you warmly remember your many friends here - just as we remember you.  I'll look forward to that 1-year MRI update, so 'don't be a stranger'!

Jim
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.

cindyj

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Re: EJTampa (Ernie's) updates
« Reply #226 on: February 26, 2010, 08:14:56 am »
Hey, Ernie!  Good to "see" you again!  So glad things are going well...you always were the model AN patient ;D

Cindy
rt side 1.5 cm - Translab on 11/07/08 Dr. Friedman & Dr. Schwartz of House Ear Institute,
feeling great!

"Life consists not in holding good cards, but in playing well those you do hold."  Josh Billings

Debbi

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Re: EJTampa (Ernie's) updates
« Reply #227 on: March 02, 2010, 08:49:02 am »
Hi Ernie - Ditto what Cindy said!  Nice to hear from you - always good to hear the happy outcomes!

Debbi
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

yardtick

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Re: EJTampa (Ernie's) updates
« Reply #228 on: March 05, 2010, 01:17:57 pm »
Hey our Ernie is a big time celebrity in Tampa Bay!  He was quoted in the St Petersburg's Times from the National Meteorological Society about the record breaking cold temperatures in the Tampa Bay area.  Tampa Bay and area is breath taking.  I suffered greatly from many, many headaches, (thanks to El Nino) but I had many, many drugs, so I did enjoy the sights.  Fort De Soto was beautiful.  I regret not hooking up with you Ernie.  I was fighting a nasty cold here at home just a few days before we left and my sister didn't have a computer in Largo.  She was going to take me to the library a few times, but you know how it is, we got busy, forgot and here I am sit at home on my computer.  The nine days went really fast!

Congratulations on your 1st year anniversary.  Book your MRI, you know it is important.  Let me know when the gulf breezes are going to start blowing my way way to warm us up here in Southern Ontario.  I love the gulf side of Florida.

Anne Marie

Sept 8/06 Translab
Post surgical headaches, hemifacial spasms and a scar neuroma. 
Our we having fun YET!!! 
Watch & Wait for more fun & games

EJTampa

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Re: EJTampa (Ernie's) updates
« Reply #229 on: March 06, 2010, 04:37:30 am »
Anne Marie  -  Sorry to hear about all the headaches.  I'm glad you otherwise enjoyed yourself here, it really is beautiful.
 
Everyone - Yesterday was my 1 year anniversary which was met without much fanfair.  I have not yet scheduled my 1 year MRI.  I see the doc next month.
 
On March 4th I went to my primary care provider about a stiff and sore shoulder.  She tried to move it around and told me that I have a stiff and sore shoulder.  Well, not really.  She said I have a "frozen" shoulder.  I have to make an appointment with an orthopedic doc.  I am taking a prescription NSAID but it doesn't really do anything for me.
 
Other than that, I am mostly off the pain killers except when I can't stop a sneeze or get into a coughing fit.  Those still bring about my headaches.
 
It's looking better and better for my making up to New England to meet some of the gang in BoSox land.  I should know for sure in a week.
 
Guess my next update will be in a year  :o
 
Ernie
-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.

leapyrtwins

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Re: EJTampa (Ernie's) updates
« Reply #230 on: March 08, 2010, 08:00:55 am »
Everyone - Yesterday was my 1 year anniversary which was met without much fanfair.  I have not yet scheduled my 1 year MRI.  I see the doc next month.
 

Ernie -

you HAVE to celebrate!  Brain surgery is a big deal and you came through with flying colors.

Besides, life is short you should never miss a chance to drink a few margaritas  ;D

Congratulations on this very important milestone - and best wishes for many more.

Here's to a clean MRI.  Cheers!

Jan
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

Keri

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Re: EJTampa (Ernie's) updates
« Reply #231 on: March 10, 2010, 07:34:02 am »
Congrats, Ernie, and I'm SO GLAD you get to go up to the New England luncheon. I'd love to go - I crashed their's last year because my husband was up in Boston for the marathon. I loved meeting everyone, though I usually couldn't understand everything being said! I had a blast. (I was several months post op at that time.)  That will be a great one year celebration for you!

Keri
1.5 left side; hearing loss; translab scheduled for 1/29/09 at Univ of MD at Baltimore
My head feels weird!!

Debbi

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Re: EJTampa (Ernie's) updates
« Reply #232 on: March 10, 2010, 06:47:38 pm »
Yes, I agree with Jan that this is an occasion to break out the party hats!  Congratulations, Ernie!

And, if you miss the NE meeting, the New Jersey group is meeting on Apr 18 (see www.ananj.org) and the NYC gang is meeting on May 2.  Heck, you could make a month out of it!

Debbi
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

EJTampa

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Re: EJTampa (Ernie's) updates
« Reply #233 on: April 09, 2010, 09:07:54 am »
I nearly missed my 1 year (and 1 month) post-op appointment!  I went to bed last night thinking about my 1030 AM appt for physical therapy.  Did I mention I have developed a frozen shoulder?  Anyway the wife tells me I have my 8 AM appointment with Dr. Bartels.  Yikes!  I forgot all about it!
 
Anyway, Dr. Bartels was very happy with my progress.  I will have my 1 year MRI on Friday, April 23rd (when I get back from meeting the gang in Worcester).  Then, assuming a clean MRI, my next appointment with the Doctor and MRI is 5 years after that!  He did say I'm welcome to come in any time between that as well :).
 
I find I'm having less and less to complain about at each visit.  I think that's a good thing.  The tinnitus is still loud, but that isn't likely to change.  I asked him to show me exactly where the bone was removed.  It was much lower than I thought.  I had assumed it was directly under the scar.  I asked because I have some "rough" spots behind the ear right where my sunglasses land.  He said that's exactly the bottom edge where the bone was put back.  My sunglasses start to hurt me after about an hour, but he did recommend a product to put on the inside of the sunglasses where it hits the ear.
 
My only other complaints were pretty severe pain when sneezing, which subsided over 30 minutes...some light-headedness when going over bumpy roads...and headaches when I first wake up.  He believes there is a slight opening where they put the bone back that can be causing the pain when I sneeze.  The pressure build up is what does it.  I told him I can certainly live with it.
 
Honestly, there are many days I don't even think about my AN.  Yes, I always notice the tinnitus, but I had that before the surgery.  Yes, I'm deaf on one side, but I have adapted well and now automatically position myself where I need to when talking to people.
 
All in all, it has been a good year and I got a great 1 year/1 month report from the doc!  I had already posted my 1 year anniversary last month, but figured I'd refresh it since I had my follow up.  I will update again in a couple of weeks with regards to my MRI outcome.
 
See some of you soon!
 
Ernie
-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.

Debbi

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Re: EJTampa (Ernie's) updates
« Reply #234 on: April 09, 2010, 12:07:55 pm »
Yay for you, Ernie!!  Will be waiting to hear the MRI results. 

Debbi
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

yardtick

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Re: EJTampa (Ernie's) updates
« Reply #235 on: April 09, 2010, 01:53:03 pm »
Way to go Ernie.  I have a hard time with the sunglasses also.  Good luck with your MRI. 

Anne marie
Sept 8/06 Translab
Post surgical headaches, hemifacial spasms and a scar neuroma. 
Our we having fun YET!!! 
Watch & Wait for more fun & games

Jim Scott

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Re: EJTampa (Ernie's) updates
« Reply #236 on: April 09, 2010, 03:25:14 pm »
Ernie ~

Thanks for the positive 1-year update!  You seem to be doing well and as an AN patient who had a similar post-op experience, I know exactly what you mean about adapting yourself  to the SSD and otherwise adjusting to the necessary changes while continuing your life pretty much as before the surgery. 

I look forward to seeing you at the Northeast ANA Discussion Forum brunch in Worcester, Massachusetts on April 18th. 

Jim 
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 #237 on: April 24, 2010, 01:30:12 am »
Not much to update, but since I did have my MRI yesterday, I figured I'd post anyway.  I really liked this imaging place that was recommended by Dr. Bartels.  It's called University Diagnostic Institute located near Tampa.  Their number one concern was my comfort on the table.  The best part was that I got the CD before leaving!  I took a look at the images.  I didn't see anything "remarkable" so I will assume everything is good.  I did not get a report as it will not be ready til Monday.  I will be in Washington DC Monday and Tuesday, so perhaps I will learn something on Wednesday.
 
I'll keep you all posted.
-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 #238 on: April 24, 2010, 06:32:18 pm »
The report for my MRI is not in yet, but Dr. Bartels looked at the scans online (technology is great, no?) and here is what he said...
 
Ernie: I reviewed the images online. There is some linear enhancement of scar but I see no tumor residual or recurrence. This is fairly common and simply means more MRIs are needed than in a totally quiet surgical bed. The formal report was not online yet.
 
So I am cautiously optimistic, and do not mind having yearly MRI's if that's what's needed.
 
Ernie
-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.

Pooter

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Re: EJTampa (Ernie's) updates
« Reply #239 on: April 24, 2010, 08:21:32 pm »
Sounds good to me...  Great report from the doctor!  Congats!

Brian
Diagnosed 4/10/08 - 3cm Right AN
12hr retrosig 5/8/08 w/Drs Vrabec and Trask in Houston, Tx
Some facial paralysis post-op but most movement is back, some tinitus.  SSD on right.
Story documented here:  http://briansbrainbooger.blogspot.com/

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