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Author Topic: Joebloggs Update  (Read 38525 times)

EJTampa

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Re: Joebloggs Update
« Reply #105 on: April 07, 2009, 09:04:26 am »
Quote from: Kaybo on April 07, 2009, 08:55:16 am
Ernie~
I guess I should take my picture down??

Yikes!  Did my post come off sounding like that?  I hope not.  :(
 
This forum is for support, both pre and post treatment.  It is those who struggle with issues post-op that tend to remain, and RIGHTLY SO! (Guess that's the part I left out?)  The photos of people who do have issues are probably more important, at least to others with similar issues, than those who didn't have any post-operative complications.  I was just trying to make a point that it's important for us to show that there are many who do well as a postie, with few if any complications.
 
I guess I should have re-read what I typed and put more thought into it before I hit the SEND button.  I apologize if I offended you or anyone else who is dealing with post treatment issues.  You guys are awesome and always in my prayers.
 
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.

moe

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Re: Joebloggs Update
« Reply #106 on: April 07, 2009, 09:15:39 am »
No worries, Ernie ;)
I'm due to post some poor outcome surgery pictures myself! It will show my improvement since surgery and more improvement to come.
I'm sure Kaybo is just kiddn. She's a trooper and has a great sense of humor.
I used to read about cases like mine on the internet prior to my surgery, and didn't even think that I would be one of them.
Ah ignorance is bliss......

I just can't seem to get myself to get the dang digital camera, give it to someone to take pics.
Procrastination....
Will keep you posted.
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

EJTampa

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Re: Joebloggs Update
« Reply #107 on: April 07, 2009, 09:24:17 am »
I always worry about hurting someones feelings.  It's hard to tell if someone is joking or being serious, unless they use the smiley faces, or the angry face :).
 
Gotta update my update now.  Parents are coming to town today for a week-long visit, so I may be a bit scarce.
 
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: Joebloggs Update
« Reply #108 on: April 07, 2009, 09:26:23 am »
Ernie~
I was just kidding, but I have thought before that maybe I don't need to be here or to show pictures - I don't want to scare anyone!  BUT, I stick around because I hope to show others that there is life after AN surgery - NO MATTER WHAT THE OUTCOME!!  I don't consider myself one of the ones that sticks around for support & encouragement - I am totally OK with who I am and what I look like (even if that is frightening to others - LOL!) - I HOPE that I am helping others in some small way.  You have to remember that I went for 12 years without ANY support from anyone else who had and Acoustic Neuroma.  I was fortunate to have a very strong FAITH and a WONDERFUL hubby and support system - not to mention that I think I had a pretty good attitude! ;)  However, I don't want to be here if I am just going to "scare" people!

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!

EJTampa

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Re: Joebloggs Update
« Reply #109 on: April 07, 2009, 09:32:13 am »
K,
 
The last thing your posts do is scare people.  You are an inspiration to so many!  The reality of the situation is that not everyone is going to have a perfect outcome.  You, and many others here on the forum, have such a positive outlook despite being dealt a really lousy hand.  For that, I applaud you!
 
Now, I'm looking at the topic line, and reading these replies, and thinking...I'm going to get blamed for this being off-topic (again). 
 
Phyl, I know.  Take it to PM's.
 
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.

lori67

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Re: Joebloggs Update
« Reply #110 on: April 07, 2009, 01:04:31 pm »
Kay,

Lots of things about you scare me - but definitely NOT your beautiful face!   ;D

And you do need to be here because you've given so much encouragement and support to so many people who have really needed it - including me.

JB - you look absolutely awesome!  And that cake looks pretty darn good too!  And all this talk of world travel is reminding me that I need to get out more!!!

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.

ppearl214

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Re: Joebloggs Update
« Reply #111 on: April 07, 2009, 01:12:15 pm »
K, you better stick around, you hear me!? You KNOW I will hunt you down otherwise.  Nuff said!  :-*  :-*  :-*

Hey Ernie,

Ok, smacks to you!  ;) 

Many here that have had surgery stick around.... even those with good/great outcomes.  I know of many that I have met personally/face-to-face that continue to contribute here... based on the thought process of "there were so many there for me in my time of need; its time for me to give back as well".  So, everyone here, regardless of treatment option or outcomes.... has their own personal reasons for sticking around (myself included.).  So, with that said...  yes, take it to PM's... let's apologize to JB for the hijack.... and btw, BoSox is going to kick Tampa today! :)


Back on track folks....
Phyl
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"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

joebloggs

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Re: Joebloggs Update
« Reply #112 on: April 07, 2009, 04:06:21 pm »
Kaybo is beautiful I've always thought that from the first moment I got on this forum... and I always think one day if I have little people hopefully they'll be mini-me's and look like Kaybo's little curly people!  Now that would be a blessing!

I'm going to Tassie this morning!!! Yipee!!!! Better go pack! Yikes!

P.S.: Cindy, Aussie term for girls is Sheila's.  Depressing I know!
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Right sided AN 2.7cm at last MRI.  Hearing loss/facial numbness.  Translab scheduled March 11th 2009.  Translab at Royal Melbourne Hospital, Australia successful!  Total tumour removed, SSD, no facial issues, numbness has left the building, balance issues but they'll get better and I'm loving life!

Debbi

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Re: Joebloggs Update
« Reply #113 on: April 07, 2009, 05:19:07 pm »
Actually, Kaybo, I was just thinking how postively lovely your porfile photo looks and how great your smile looks!  Don't you dare leave or not post pictures!  I took such inspiration from you when I woke up with a limp face - I thought about you and how terrific your life is, and I immediately felt better. 

And, BTW, JB - you look AMAZING!!

Heck, I think we all look pretty amazing - warts and all, as my great grandmother used to say...

Debbi, warts and all...
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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

Kaybo

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Re: Joebloggs Update
« Reply #114 on: April 07, 2009, 08:44:16 pm »
Thanks guys for the sweet and reassuring words!  I really have struggled with what I should say to "newbies" and if my story is too intense.  JB - I hope that you are as blessed as we are by our sweet (most of the time) girlies!

K
*end of hijack!*
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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!

joebloggs

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Re: Joebloggs Update
« Reply #115 on: April 08, 2009, 05:28:09 am »
I don't remember thinking it was too intense when I first got started here.  I remember thinking, jeez Kaybo has had a massive amount to deal with and she's just got on with it and having a fabulous life (that's how it looks to me anyway!) what a legend.  I thought, that's how I will be - no point sitting around feeling sorry for myself because I have (had!!!) a tumour - just bloody get on with it.  Kaybo you're my hero!  Lessons in how to live life right there.  I will cross fingers for beautiful little people like yours for sure!

As for life here - got back to Tasmania this afternoon... blissful.. so quiet and tranquil!  Aaaaah!  Should be a good sleep tonight!  Yay!

xx
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Right sided AN 2.7cm at last MRI.  Hearing loss/facial numbness.  Translab scheduled March 11th 2009.  Translab at Royal Melbourne Hospital, Australia successful!  Total tumour removed, SSD, no facial issues, numbness has left the building, balance issues but they'll get better and I'm loving life!

Jim Scott

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Re: Joebloggs Update
« Reply #116 on: April 08, 2009, 03:08:27 pm »
Jo ~

Congratulations on your excellent recovery aided, no doubt, by your intrepid attitude (and youth).  You're an inspiration in your own way.  I admire post-op AN patients that 'just get on with it'.  I'm married to a lady that didn't have an AN but has endured several surgeries for spine and other problems and 'just gets on with it' every day.  Another inspiration, albeit closer to home, for me.  :)

Enjoy your beautiful, pristine Tasmania.  A place I might like to visit, someday.

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.

Esperanza

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Re: Joebloggs Update
« Reply #117 on: April 08, 2009, 04:57:27 pm »
JB,
your recovery is inspiring...  fraid you will miss the daffs though as they've been out for a while and are now getting past their best (well round here they are anyway!).  We are expecting a mixed/poor Easter weekend weather wise - what a shame I am off to Cyprus on Sat. for a week and will miss most of it  ;D

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Profoundly deaf suddenly on AN side with vertigo January 3rd 2008.
12mm left side AN diagnosed 20th Jan. 2008.  MRI  in July shows no growth. What do I do now?????

stoneaxe

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Re: Joebloggs Update
« Reply #118 on: April 08, 2009, 06:51:29 pm »
Kay...you don't scare people...you reassure them. Life is too short not to be smiling from your heart.

JB...must feel great to be home. Congrats on the swift recovery.
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Bob - Official Member of the Postie/Toasty Club
6mm AN treated with Proton Beam Radiosurgery in March 2004
at Mass General Hospital, Dr's Loeffler and Chapman
Cut the little bugger out the second time around in 2009..translab at MGH with Dr's McKenna and Barker.
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joebloggs

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Re: Joebloggs Update
« Reply #119 on: April 08, 2009, 07:05:03 pm »
Thanks all!

Jim, you're lucky to be married to a 'get on with it' type!  She must be a strong fabulous woman!

Esperanza, no one likes a bragger!  Enjoy Cyprus, hope it's warmer than home!  Bummer I'm going to miss the Daffs, ah well... maybe there'll be a few tulips left when I get back!

And Stoneaxe, it's GREAT to be back here, very quiet.  A bit colder than when I left over a month ago though!!  Ah well!  Might think about trying a bit of knee paddling this weekend...will see!
Logged
Right sided AN 2.7cm at last MRI.  Hearing loss/facial numbness.  Translab scheduled March 11th 2009.  Translab at Royal Melbourne Hospital, Australia successful!  Total tumour removed, SSD, no facial issues, numbness has left the building, balance issues but they'll get better and I'm loving life!
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