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Author Topic: Just when I was relaxing .....  (Read 60706 times)

leapyrtwins

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Re: Just when I was relaxing .....
« Reply #135 on: May 16, 2011, 08:59:03 pm »
Clarice, it's fantastic to hear that you are doing so well  ;D

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

CHD63

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Re: Just when I was relaxing .....
« Reply #136 on: May 16, 2011, 11:44:32 pm »
Thanks, Jan .....

Couldn't have done it without all of you forumites, who have been there, done that!

Clarice
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Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

suboo73

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Re: Just when I was relaxing .....
« Reply #137 on: May 17, 2011, 04:22:05 am »
Hi Clarice & Truman,

SO GLAD to hear everything is going so well for you since surgery...amazing!
Enjoy the gardens, even with the cool weather - we have unending rain back here in the Shenandoah Valley, so an umbrella is definitely needed.

My best to you as you continue your recovery!
Thank you for the initial postings, Truman!

Sue
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suboo73
Little sister to Bigsister!
9mm X 6mm X 5mm
Misdiagnosed 12+ years?
Diagnosed Sept. 2008/MRI 4/09/MRI 12/09/MRI 1/21/11
Continued W & W

JerseyGirl2

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Re: Just when I was relaxing .....
« Reply #138 on: May 17, 2011, 07:09:58 am »
Clarice,

It's so good to hear that your surgery went well and that you're experiencing a good recovery. I think that many people have the preconceived notion that those of us who've traveled far for our surgery are going to have a more difficult time and feel stranded in a distant city. I attended a taping of "Jeopardy!" in Culver City (about a 30-minute drive from House) the Tuesday after my Sunday afternoon release to Seton Hall from the hospital and ate lunch in Hollywood the next day. My cross-country flight home ten days after surgery was as routine as any flight I've taken. That being said, everyone is different and there are no guarantees as to how you're going to feel, but folks shouldn't just make the assumption that travelling for surgery is a bad idea.

Hope you continue to do well and have a good trip home.

Catherine (JerseyGirl 2)
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Translab surgery and BAHA implant: House Ear Institute, Los Angeles, 1/2008
Drs. J. House, Schwartz, Wilkinson, and Stefan
BAHA Intenso, 6/2008
no facial, balance, or vision problems either before or after surgery ... just hearing loss
Monmouth County, NJ

CHD63

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Re: Just when I was relaxing .....
« Reply #139 on: May 17, 2011, 07:23:43 am »
Catherine .....

So true. So true. I wouldn't exactly call this a vacation trip, but we are going down to Newport today for an overnight at the beach. Would love to go see a Jeopardy taping. The hyperacussis I have makes me a tad uneasy if it might be loud music.

Best decision we ever made to come out here for surgery.

Clarice
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Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

Kaybo

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Re: Just when I was relaxing .....
« Reply #140 on: May 17, 2011, 07:59:28 am »
Now, see, I disagree...I have never thought that travelling would be any different than having surgery anywhere else.  I think it just all depends on the individual, surgery and the way they recover!  I went to Johns-Hopkins for my T3 surgery and it was no different than the surgeries I have had in my hometown...maybe a bit unfamiliar surroundings, but nothing a GPS couldn't help!   ;)

Just my opinion...

K   ;D
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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!

ombrerose4

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Re: Just when I was relaxing .....
« Reply #141 on: May 17, 2011, 09:13:48 am »
Clarice,

You are such an inspiration to all of us! I am so glad your surgery went well and you are getting to relax and enjoy some of the California scenery! Have a safe trip home.
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Retrosigmoid 9/24/09
AN 2.4+ cm left side
Mount Sinai Hospital, NYC (Dr. Bederson and Dr. Choe)
BAHA surgery 1/4/2010

ksiwek

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Re: Just when I was relaxing .....
« Reply #142 on: May 17, 2011, 11:09:37 am »
Yay!  I am soooo happy to read your posts!  I was there a year ago now....can you believe it!?!?  I wonder if you are in the same room I was?  They gave us a bigger room since we had a baby  ;D

I am glad you are getting to do some sight seeing.  The weather and scenery in CA make it ideal for those important post op walks to iron out the balance!  We headed down to Malibu one day and it was amazing just to sit in the sun and hear the ocean waves!

Really though,  I am just so happy for your outcome.  I can't wait for you to get your processor!  When I had my translab, Dr F barely shaved any hair...I was surprised!  I had much more hair shaved for my subsequent BAHA surgery, so I assume more hair shaving is the product of both at once.

Man oh man do I remember the steroid insomnia!  I remember on day 3 or 4 before my eyes could focus much (so I couldn't read the clock) I was convinced it was going to be morning soon.  So, I rang for the nurse to get me a new gown (due to steroids and post pregnancy I sweat through multiple) and get me cleaned up for breakfast.  When the nurse came I told her I wanted to get ready for breakfast and a visit from my husband and baby.  She said sure, but you know that it is only 1am right?!?!  Shoot!  That was a long wait for company!  Funny looking back!

Keep posting and we'll keep praying!

Best,
Kris

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Translab 6/4/10 for 4+ cm left AN.  Drs Friedman and Schwartz at HEI saved my life!
BAHA surgery on 10/7/10 with Dr Battista of Chicago Ear Institute (Oticon Ponto Pro)

jerseygirl

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Re: Just when I was relaxing .....
« Reply #143 on: May 17, 2011, 05:54:04 pm »
Clarice,

It is such a pleasure to read about your phenomenally good outcome! Continued good recovery to you!

        Eve
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Right side AN (6x3x3 cm) removed in 1988 by Drs. Benjamin & Cohen at NYU (16 hrs); nerves involved III - XII.
Regrowth at the brainstem 2.5 cm removed by Dr.Shahinian in 4 hrs at SBI (hopefully, this time forever); nerves involved IV - X with VIII missing. No facial or swallowing issues.

Denise S

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Re: Just when I was relaxing .....
« Reply #144 on: May 17, 2011, 07:40:57 pm »
YIPEE!!!  ;D

I am so glad to be reading posts from you so sound that all sound overall positive!!  I hope things continue to go well for you and glad to hear the docs jumped on the steroids when needed.  Hopefully you won't have much with the delayed paralysis part.   Hopefully you can really enjoy some of your time out there....sounds like you are for sure going to try!!   Take Care, Denise (MI)

BEST WISHES for a speedy & healthy RECOVERY!!!
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W&W 2 yrs. (due to watching other brain tumor: it's stable)
Left AN:  1.2 cm (kept growing during 2 yr.)MIDDLE FOSSA  11/9/09;  Michigan Ear Institute Dr. Zappia & Pieper
SSD, mild tinnitus, delayed onset of facial paralysis lasting 3-4 weeks, no tears AN side
BAHA surgery 10/2/12 Dr Daniels G.R.,MI

cdove

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Re: Just when I was relaxing .....
« Reply #145 on: May 19, 2011, 11:35:32 am »
Hello and sorry to hear about your apparent recurrence. I am 10 years W&W this month and have posted only once or twice. Regarding the radium treatments, I had dozens of x-rays as a child during pre- and post-surgical treatment for a sub-occiptal cyst and I would absolutely not have FSR for my AN unless I had not other choice OR I was over 80 years old (53 right now). BUT, all of life's a risk. Do your research, get a few opinions, and get on with it. You have spunk...you'll make the right decision and be fine!

My very best to you,
Chris
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5-7mm Right Side AN diagnosed 5/2001
Stable with little change
Proud member of W&W ever since

Sheryl

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Re: Just when I was relaxing .....
« Reply #146 on: May 19, 2011, 02:32:47 pm »
Hey Chris - didn't know there was another long-term W&Wer out there.  I'll be 10 years in November and Derek is right behind me. 
Continued success with W&W,
Sheryl
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9th cranial nerve schwannoma - like an acoustic neuroma on another nerve. Have recently been told it could be acoustic neuroma. Only 7 mm of growth in 18 years. With no symptoms. Continuing W&W

Keri

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Re: Just when I was relaxing .....
« Reply #147 on: May 20, 2011, 08:28:01 am »
Clarice,
I'm hoping and praying recovery is still going well! So happy for you! Enjoy the rest of your time in CA. Tell David "hello"!!
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!!

mk

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Re: Just when I was relaxing .....
« Reply #148 on: May 20, 2011, 02:07:40 pm »
Hi Clarice,

Since our surgeries were so close together I feel like we are "surgery buddies". It seems like you really did awesome and I hope things are getting even better every day.

Marianna
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GK on April 23rd 2008 for 2.9 cm AN at Toronto Western Hospital. Subsequent MRIs showed darkening initially, then growth. Retrosigmoid surgery on April 26th, 2011 with Drs. Akagami and Westerberg at Vancouver General Hospital. Graduallly lost hearing after GK and now SSD but no other issues.

CHD63

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Re: Just when I was relaxing .....
« Reply #149 on: May 20, 2011, 07:45:25 pm »
Yes, I continue to do far better than I ever dreamed I would.  These guys are awesome out here.  Just picked up both surgical reports and Dr. Schwartz had some tough scar tissue (from the surgery three years ago) to cut through to get out the regrowth, but he successfully did it, with no permanent damage to the facial nerve!

I still have a teensy, teensy bit of facial weakness.  Really only noticeable when I grin.  A weird feeling like a burning thread running across my lower left lip.  Food still does not taste normal.  Some dry eye so yes all of you mother hens out there, I am vigorously putting eye drops in my eye!!  Dr. Friedman assured me this is a very temporary and very minimal reaction and I believe him.

Meeting with LADavid, Nancy, and Lainie tomorrow to go out to eat at The Yardtown in LALive!!  Should be fun!

Pack on Sunday, early flight home on Monday.  Yaaaaaaaaaaaaaay!

Clarice
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Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011
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