Author Topic: EJTampa (Ernie's) updates  (Read 57098 times)

EJTampa

  • Hero Member
  • *****
  • Posts: 604
  • Rays Vs Red Sox Game 2 ALCS (Isabel and Ernie)
Re: EJTampa (Ernie's) updates
« Reply #120 on: March 15, 2009, 05:09:44 pm »
Thanks Steve,
 
Yeah, "my precious" :)  I got a laugh out of that one.  I love that series of movies.  It may be time to create a calico knit hat to pass around as well so more people will have something to grab on to!
 
Time for our evening walk!  Catch you guys later.
 
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.

EJTampa

  • Hero Member
  • *****
  • Posts: 604
  • Rays Vs Red Sox Game 2 ALCS (Isabel and Ernie)
Re: EJTampa (Ernie's) updates
« Reply #121 on: March 15, 2009, 08:06:49 pm »
Yes folks, that's a kegerator, but it's empty at the moment :)
 
Day 11 - Sunday March 15th.  Most of the day has gone similar to the last 2, although I've had more pain in the last hour now behind the ear.  More pressure and more pain.  I'm sure it will pass as it always does.  I find my tinnitus is still responding to sounds from the other ear in a big way.  I was on the phone today, something which is still a bit uncomfortable for me, and everytime the other person talked, it would "echo" a noise in the SSD ear.
 
I also noticed that as I walk straight ahead and look to the horizon, my eyes don't stay focused like they did before the surgery.  Each bounce of a step moves the image across my vision rather than my vision following the image.  I'm sure it's been that way for the last week and a half, just that I'm really starting to try to pay attention to what's different.
 
That's all for now.  Going to take my medicine and get some sleep.  Good night.
 
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.

NancyMc

  • Hero Member
  • *****
  • Posts: 857
  • One year and all is well, almost.
Re: EJTampa (Ernie's) updates
« Reply #122 on: March 16, 2009, 05:28:07 am »
Steve,
Quote
I bet she would reschedule surgery again.
Not!

Ernie,
Quote
"echo"
You must not have had enough fat for the lipo procedure to fill the void left by tumor extraction!  I won't have that problem.
Thank you for the continued progress report.

Nancy
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

cindyj

  • Hero Member
  • *****
  • Posts: 1434
Re: EJTampa (Ernie's) updates
« Reply #123 on: March 16, 2009, 05:50:14 am »
Hey, Ernie!  The noises, odd vision, etc sound like the "normal" early on recovery things - at least, similar to mine ;)  I know the pre-posties appreciate all your detailed updates - it will help when they begin their recovery process to remember that someone else did experience the same (or nearly so) thing.

...oh, let's not ever let the Magic Scarf become "My Precious!"   Recovery is tough enough without having all those creatures chase us around :o  (the steroids are frightening enough!)  Now, if we'd like to start a topic on The Ring...perhaps we've finally found our next book for the ANA Book Club??? 

Keep up the great work, Ernie!

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

EJTampa

  • Hero Member
  • *****
  • Posts: 604
  • Rays Vs Red Sox Game 2 ALCS (Isabel and Ernie)
Re: EJTampa (Ernie's) updates
« Reply #124 on: March 17, 2009, 07:30:44 am »
Day 12 - Monday March 16th.  Nothing unusual to report in itself.  Isabel went back to work so I was on my own for most of the day.  Went out for my walk around 9 AM, it was cloudy and a bit foggy, so nice and cool.  We've been visiting an alligator at the park, but he/she wasn't there, probaby because it was not sunny yet.
 
I tried a game of pool.  My aim is so far off it's scary.  Anyone wanna play William Tell? :)  I'll shoot first.
 
Wednesday will be my last daily update, but I will update if I have new improvements/setbacks.
 
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.

lori67

  • Hero Member
  • *****
  • Posts: 3113
Re: EJTampa (Ernie's) updates
« Reply #125 on: March 17, 2009, 07:52:03 am »
Ernie,

I'm willing to bet you could still beat me at pool.  I think I'll pass on the William Tell offer though. My head has enough holes in it, thank you!

Lori
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.

moe

  • Hero Member
  • *****
  • Posts: 1697
Re: EJTampa (Ernie's) updates
« Reply #126 on: March 17, 2009, 08:49:23 am »
Ernie,
Good luck at your doctor's appt tomorrow. I'm sure he will be truly amazed at your recovery.
Keep posting your recovery- we love to hear from you. Give your body time to adjust to the SSD, and my great advice- Pace yourself. (Hard to do I know). Oh and frequent rest periods (I prefer NAPS).
Maureen  :-\
PS- I like this icon because I have no smile on the left. There needs to be an icon with the droop going the other way. Though this icon is described as "undecided" I think it would be appropriate as "left sided facial paralysis."
Jim- can you get us a right sided facial paralysis smiley? :)
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

leapyrtwins

  • Hero Member
  • *****
  • Posts: 10826
  • I am a success story!
Re: EJTampa (Ernie's) updates
« Reply #127 on: March 17, 2009, 05:51:18 pm »
Yes folks, that's a kegerator, but it's empty at the moment :)
 

Ernie -

are you sure you used the correct smiley guy in your post?  Shouldn't you have used the one with the frown??  ;)

Good luck at the doc's tomorrow.  Like Moe said, I think he'll be amazed at your progress; VERY impressive!

I am officially nominating my buddy Lori for that game of William Tell - but only because I have a prior engagement.  (Love you, Lori  :-* )

Jan

Oh - note to Steve.  Great story about the scarf.  I thought LADavid was the only true writer among us, but you rank right up there  ;D

And Jim, it saddens me to think that you don't own a kegerator  :'(  When's your birthday, again??  Perhaps I can convince our fellow forumites to chip and send you one  :D
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

EJTampa

  • Hero Member
  • *****
  • Posts: 604
  • Rays Vs Red Sox Game 2 ALCS (Isabel and Ernie)
Re: EJTampa (Ernie's) updates
« Reply #128 on: March 17, 2009, 08:48:56 pm »
You're right Jan!  It should have read Yes folks, that's a kegerator, but it's empty at the moment  :'(
 
But I did give up alcohol for the Lenten Season, so better it's empty than full right now :)
 
Day 13 - Tuesday March 17th.  Today was Saint Pattys day, and yes I wore green!  I'm not Irish, but don't mind getting into the spirit!  My wife had a doctors appointment today for some marginally scary stuff, but everything looks negative, which is a positive thing.  I was out much of the day, so I'm on the tired side.  My sister mentioned something about them taking out my balance nerve and replacing it with a grumpy nerve.
 
My daughter had two friends over today.  They were sitting at the table eating, all talking at once while I was trying to listen to the television.  That was a new sensation for me.  I can't tune out, or sort of discriminate sounds anymore.  I had to ask them to please try and keep it down.  Strange coming from someone half deaf, huh? :)
 
Tomorrow is my big day...get my 20 staples removed.  Thanks for the well wishes and I'll be sure to report back.
 
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

  • Hero Member
  • *****
  • Posts: 10826
  • I am a success story!
Re: EJTampa (Ernie's) updates
« Reply #129 on: March 17, 2009, 09:12:40 pm »
I was out much of the day, so I'm on the tired side.  My sister mentioned something about them taking out my balance nerve and replacing it with a grumpy nerve.

Ah, yes, I remember the grumpy nerve very well.  I too experienced it. 

Some of it comes from just being so gosh darned tired after surgery, some of it comes from being frustrated at your progress and/or limitations.

SSD takes a while to get used to also.

The good news is that this too shall pass.  With time, the fatigue will go away and you should get used to the SSD. 

Staple removal is a major milestone.  Congratulations (in advance)!

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

EJTampa

  • Hero Member
  • *****
  • Posts: 604
  • Rays Vs Red Sox Game 2 ALCS (Isabel and Ernie)
Re: EJTampa (Ernie's) updates
« Reply #130 on: March 18, 2009, 09:52:59 am »
Day 14 - Wednesday March 18th.  Yep, 2 weeks ago I was at my pre-op appointment, getting cleared for surgery.  Hard to believe it's been 2 weeks already.  I count Surgery day as day 1, which was Thursday the 5th.
 
Jan, thanks for letting me know I wasn't the only one who ended up with the vestibular/grumpy nerve replacement procedure during surgery :).  I am still not sleeping well at night, so I am tired during the day.  I do try to do too much, and you all tell me all the time not to.  Clearly, it is my own fault.
 
The Doctor told me he will leave it up to me to do vestibular exercises at home, unless I have a particularly hard time with it.  I'm going to start searching these threads for what others have done.  I still have issues riding in a car.  Any long curve with any tight radius at all (on/off ramp) or a particularly lot of turns makes me dizzy still.  I know, it's only been 2 weeks!
 
He was very happy about my quick escape from the hospital.  He said the incision looks good, with just one small spot that has some skin overlap that he wants us to work at a bit by scrubbing lengthwise along that area.  Two more weeks of ointment to take care of that too.
 
Good news for me - I can sleep flat now!  I can sleep on any side I want.  I can get water in my ear without doing any harm (no need to protect it anymore).  When I'm done with my steroids, I can take Ibuprofen again for my non-AN related migraines (haven't had any since the surgery anyway).  All in all I had a very positive AN experience, and thank God every day for the wonderful attention he gave me.  Of course, with all of your prayers, he couldn't very well forget :).
 
I am not going away.  I will be reading a lot, and will continue to post things of interest and try to help those who have questions that I can answer.  Thank you all so much for your support through all of this!
 
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.

Jim Scott

  • Hero Member
  • *****
  • Posts: 7241
  • 1943-2020 Please keep Jim's family in your hearts
Re: EJTampa (Ernie's) updates
« Reply #131 on: March 18, 2009, 10:11:38 am »
Hi, Ernie ~

Thanks for the updates and for assuring us that you'll still be a part of these message boards.  As you well know, your recovery has been astounding and an inspiration to many, especially those who are scheduled for or contemplating AN removal surgery.  Thanks for sharing it with us.

I'm pleased to read that you're cognizant of your blessing - and from where it came - just as I am in my own case, which was similar to yours in some ways, minus the 24-hour hospital stay (I was in for 4½ days and now feel like a slacker). :D  I firmly believe in the power of prayer - and your experience (and many others) help validate that faith.  Indeed, life is good.  :)

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.

Syl

  • Hero Member
  • *****
  • Posts: 765
  • Forgive me. I'm having an AN moment.
Re: EJTampa (Ernie's) updates
« Reply #132 on: March 19, 2009, 12:24:25 pm »
Ernie:

The rate at which you are recovering is amazing. When you go for walks, do you have a walking buddy or do you use a cane? On week 6, I put away my cane. Car rides were rough for a while--like riding a roller coaster. I think week 6 was also when I got the nerve to drive.

Continued wellness, my friend.

Syl
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.

EJTampa

  • Hero Member
  • *****
  • Posts: 604
  • Rays Vs Red Sox Game 2 ALCS (Isabel and Ernie)
Re: EJTampa (Ernie's) updates
« Reply #133 on: March 19, 2009, 12:44:49 pm »
Hi Syl,
 
The first couple of walks, I held my wifes hand to steady me, but mostly from fear maybe.  I do well walking straight lines, and only have trouble when I look up and down or left to right.  Now, with my wife working again, I walk by myself, and without a cane.  I do have to be very careful if I look around.  I do lose step...sort of stumble when I try to look around.  When in a car, especially during turns or sharp curves (on/off ramps), I find myself closing my eyes.  Still, I know you are right in that my recovery overall is amazing and I thank God for that (and all of you).
 
It's good to hear that you were able to drive again at 6 weeks, since that's my goal right now.  I noticed that a quick surgical recovery does not necessarily translate to a quick vestibular recovery :).  Those of us who still had nearly full use of our vestibular nerve going into surgery have a bit of work to do post-surgery.  Still, I wouldn't trade my outcome for anything.  You know, they say you have to be comfortable with your decision of treatment going in.  I spent months going over optoins, and know I made the right one for me.
 
Syl, I know your surgery was back in June, and that you still have the headaches, but what about balance now?  Do you still notice a big difference from your pre-surgery balance?
 
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.

Syl

  • Hero Member
  • *****
  • Posts: 765
  • Forgive me. I'm having an AN moment.
Re: EJTampa (Ernie's) updates
« Reply #134 on: March 20, 2009, 10:50:53 am »
Ernie:

I think it's great that you are walking without assistance so soon. I found a cane very useful. It helped me pick up speed and allowed me to turn my head. My sister insisted that it slowed my progress, by making me too dependent on it. I argue that it had quite the contrary effect. It elevated my confidence and got me walking by myself. I got out more because of it. In fact, before life with an AN, I always preferred walking with a buddy or I wouldn't go by myself. Now I prefer going by myself.

As for my balance, it is about the same as it was pre-surgery. In fact, I didn't even notice my balance was off until I learned what I had. I just felt dizzy alot. I find I'm bumping into doorways less often now. I don't think people can really tell that my balance is a bit off. So it's not too bad. I have come a long way with my balance since I had my surgery. I can almost stand on one foot with my eyes closed.

Continue healing.

Syl

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.