Author Topic: Shocking Good News!!  (Read 18394 times)

tgillesp

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Shocking Good News!!
« on: September 17, 2010, 07:25:56 pm »
I finally received a call back today from Dr. Chang's nurse, Elizabeth.  She said Dr. Chang and another doctor viewed my films and found no tumor!  Actually, she left a voicemail and I just had to call her back to see if I heard right.  She was so nice and took the time to explain to me everything that transpired.  She said first she looked at my films and could not find my tumor.  Then she told Dr. Chang and he made fun of her, then he looked, then the other dr. (can't remember his name) looked and none could find a tumor.  They even read back over the radiologist report again to see if they overlooked something, viewed the scans again and still saw nothing.  She said that the spot the radiologist found could be any number of things but no tumor.   He recommended I get another MRI in a year to be sure.  I am so shocked.  First, that I have been put through this nightmare for over 3 weeks for nothing.  I have stressed, cried, lost weight...you name it.  And second, that something good has actually gone my way.  Just to be absolutely sure, I am still going to mail my MRI to House and see if they say the same.  Not that I don't value the opinion of Dr. Chang, but I want to be absolutely sure.  My birthday is Sunday and now I can actually look forward to celebrating.   

I just want to say that I will never forget those on this forum who have been so supportive and helpful, especially those who responded endlessly to my questions (Cheryl, Jim, Jan, Clarice, Lori, Tumbleweed, Phyl).  Somehow, I feel bad that I will no longer belong to this community of such loving and caring people.  But I will still be here reading, caring, and listening to your stories.  I wish so much that I could give something back and I wish and pray for positive outcomes for all of you.   I may not have an AN after all, but I most certainly believe that I can understand what you are all going through as these last 3 weeks have been my worst nightmare.

Again, you all have my most heartfelt thanks...love...and best wishes.   I will pray for you guys every day!


Much Love
Tracey
(P.S.  and I will let you all know what House has to say)
diagnosis 8/25/2010 5mm acoustic neuroma...second opinion by Dr. Chang says I have no tumor!!!

Kaybo

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Re: Shocking Good News!!
« Reply #1 on: September 17, 2010, 08:01:12 pm »
That is AWESOME news - so happy for you!  :o

K   ;D
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!

Tod

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Re: Shocking Good News!!
« Reply #2 on: September 17, 2010, 08:04:32 pm »
It is very awesome!  I hope all future MRIs are clear,

-Tod
Bob the tumor: 4.4cm x 3.9cm x 4.1 cm.
Trans-Lab and Retro-sigmoid at MCV on 2/12/2010.

Removed 90-95% in a 32 hour surgery. Two weeks in ICU.  SSD Left.

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28 Sessions of FSR @ MCV ended 2/9/12.

Captain Deb

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Re: Shocking Good News!!
« Reply #3 on: September 17, 2010, 08:20:59 pm »
Yeeeeee-HAAAWWWW!!!!!

Capt Deb
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
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Chronic post-op headaches
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leapyrtwins

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Re: Shocking Good News!!
« Reply #4 on: September 17, 2010, 08:24:32 pm »
Well as we used to say when I was younger, Holy Smokes!!

This is incredibly wonderful news  ;D  Great birthday present.

I agree with your idea of sending your films to House - and it's not because I doubt Dr. Chang either.  You just definitely want to make sure there is no tumor.

You are welcome here at the Forum any time - you don't have to have an AN to join us. 

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

CHD63

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Re: Shocking Good News!!
« Reply #5 on: September 17, 2010, 08:39:57 pm »
Tracey .....

WOW, what terrific news to hear!  As Jan said, you are welcome to stick around and join in with us any time.  Actually ...... since Dr. Chang recommended another MRI in a year, you can at least stay with us until you get that next clear MRI.

Be sure to let us know what House has to say about your MRI.  Also, let us know what they think is causing your symptoms.

Best thoughts.  Clarice
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

tgillesp

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Re: Shocking Good News!!
« Reply #6 on: September 17, 2010, 09:02:49 pm »
Thank you all, and anyone else I did not mention before.  I do plan to stick around because, although I won't really have any advice to offer anyone, I care about and want to know how all of your stories turn out.  And I will let you all know what House says.  I actually have a followup with ENT on Tuesday and can't wait to tell him what Dr. Chang said, and plan to ask him for a referral to a neurotologist anyway because I do want to continue to try and find out what is causing my hearing loss and tinniitus.  But I will be sure to keep in touch. 
diagnosis 8/25/2010 5mm acoustic neuroma...second opinion by Dr. Chang says I have no tumor!!!

tgillesp

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Re: Shocking Good News!!
« Reply #7 on: September 17, 2010, 10:16:01 pm »
Well, I've been trying for over an hour to get my profile pic on here so you would all know who you've been talking to and I feel like an idiot because obviously everyone else can get it done and I can't.  I did a search for profile pic and followed all the many different instructions I found.  I created a photobucket account, uploaded a pic, then clicked on the html link, opened my profile, right clicked where it says "I have my own photo" pasted, and then saved.  All I see is a box with a small image...but not my pic.
diagnosis 8/25/2010 5mm acoustic neuroma...second opinion by Dr. Chang says I have no tumor!!!

Joef

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Re: Shocking Good News!!
« Reply #8 on: September 18, 2010, 06:58:44 am »

your close ... there is a lot of html stuff in the avatar....  you need only this:

http://i853.photobucket.com/albums/ab100/tgillesp1/Me-1-1.jpg

4 cm AN/w BAHA Surgery @House Ear Clinic 08/09/05
Dr. Brackmann, Dr. Hitselberger, Dr. Stefan and Dr. Joni Doherty
1.7 Gram Gold Eye weight surgery on 6/8/07 Milford,CT Hospital

dalern

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Re: Shocking Good News!!
« Reply #9 on: September 18, 2010, 09:01:16 am »
What great news.  I have a similar first hand experience, but went through a lot FIRST.  I DID have a tumor in the 3rd ventricle (not an AN) and had a craniotomy in 1991.  For many reasons, they were unable to get the tumor after 9 hours of surgery.  I had MRIs yearly to make sure it had not moved or grown.  Two years ago, I got a call saying the tumor was gone.  I thought they read the films wrong and called my neurosurgeon.  He said that he and the neuro-radiologist were in agreement and it was totally gone.  The only thing he could figure was that during the surgery all those years ago, he did knick the tumor and it just may have dissipated over the years.  I am having my final MRI Monday to make sure it is still gone.  He had told me to wait two years and repeat the MRI.  If this MRI is clean, no more MRIs and no more tumor concern.  I will keep you all posted.  I can certainly related to your surprise.  Mine was not a second opinion, but a real change in my brain.  Very unusual, but VERY GOOD NEWS.

Good luck to you and please do stay on the forum and let us know what happens.
~Dale
Dale Barnes, RN, MSN, CLNC
Tarzana, CA
1998 Sudden Onset Idiopathic Sensorineural  hearing loss diagnosed at House Ear Institute, Los Angeles
BAHA June 30, 2010 Dr. Jeffrey Harris UCSD San Diego

Anomar11

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Re: Shocking Good News!!
« Reply #10 on: September 18, 2010, 09:59:53 am »
Tracey,

Very cool!  Dr. Chang is who treated me.  I have dealt with Elizabeth quit a bit, also.  Great people. Great professionals.  I'm so happy for you.  We all know all too well about the stress of learning about these things.  You win some and you lose some.  Looks like you won big on this!  Happy Birthday.

Mona
L An diagnosed 5/08 2.0 x 1.1 x 1.3 cm.  Cyberknife Stanford Drs Chang and Gibbs Nov '08.  One yr: 2.1 x 1.4 x 1.6, Two yr: 2.2 x 1.5 x 1.8, Three yr: 1.9 x 1.5 x 1.5, Four year 1.6 x 1.1 x 1.1, Six yr: 1.4 x .7 x .9

tgillesp

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Re: Shocking Good News!!
« Reply #11 on: September 18, 2010, 10:16:08 am »
Finally, got it!  Thanks Joef.

And Dale, your news is wonderful too!  And you will find out soon if your tumor is gone for good!  I'm hoping and praying it is.  Can't wait to hear.
diagnosis 8/25/2010 5mm acoustic neuroma...second opinion by Dr. Chang says I have no tumor!!!

Jim Scott

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Re: Shocking Good News!!
« Reply #12 on: September 18, 2010, 01:21:18 pm »
Tracey ~

I'll keep this brief: congratulations on the good news! :D  Thanks, too, for your kind and heartfelt words for our membership.  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.

leapyrtwins

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Re: Shocking Good News!!
« Reply #13 on: September 18, 2010, 02:57:00 pm »
Good luck with your MRI, Dale.  Hope the results are clean  ;D

Great picture, Tracey.  Nice to finally "see" you.

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: Shocking Good News!!
« Reply #14 on: September 18, 2010, 04:12:43 pm »
Whhoooohooooo for Tracey!   ;D  That puts a big smile on my face!  Well, half of it anyway!   ;)

You can always be an "Honorary AN-er" - all of the benefits with no bad haircuts, droopy face or hearing loss!

Hope this is the best birthday ever!


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.