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Author Topic: Happy to share good news  (Read 4743 times)

Goldie

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Happy to share good news
« on: February 24, 2012, 07:30:04 pm »
It's been quite a while since I've posted, but I wanted to share that I had my "2-yr" MRI recheck (actually 2 yr 5 mo) today and it was clear - no sign of tumor!  Next recheck in 5 years.   :D  My tumor was stuck to my facial nerve at the time of surgery, and amazingly I was told by my neurosurgeon today that my face looks "normal" - what a nice word to hear.  I told him I feel normal, but it's a new normal that I think is here to stay...things that I can live with.  I've made it to the "other side" and am still so thankful for my surgeons and the support from friends, family, and this forum. 

Denise D. from Minnesota

P.S.  Love my BAHA!
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GK 5/06 at Mayo for small AN after balance and slight hearing issues.  Progressive hearing loss following GK.
3/09 - facial spasms began.  MRI shows tumor growth.
9/09 - MRI shows further growth.  "GK failure."  Translab 10/1/09 success!  BAHA 10/8/10.

Cheryl R

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Re: Happy to share good news
« Reply #1 on: February 24, 2012, 08:33:15 pm »
Great news, Denise.         I am happy for you and doesn't seem like it's been that long since sat beside each other at lunch and guess that was Chicago.    That was when you were worried about what to do,so this is really good news!              Hope you've had as good a winter as we have not that far south of you.
                                                                                Cheryl R   
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Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

New girl

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Re: Happy to share good news
« Reply #2 on: February 25, 2012, 08:52:30 am »
Congrats Denise!  ;D
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9mmx14mmx9mm
Diagnosed 6/1/2011
Retrosigmoid Surgery 9/27/2011
Daniel Lee (MEEI) & Fred Barker (MGH) - Exceptional Surgeons

Jim Scott

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Re: Happy to share good news
« Reply #3 on: February 25, 2012, 12:37:31 pm »
Denise~

Congratulations on this fantastically good news!  :)

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.

windy

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Re: Happy to share good news
« Reply #4 on: February 28, 2012, 12:36:42 pm »
Denise, your story is a good one to relate to for a patient with possible growth, post GK. I love reading posts like yours when you have had both treatments. I am so glad you are doing well. Thank you for sharing your good news!
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* Diagnosed w/AN (9mm x 11mm x 9mm) - 6-10-08
* GK @ UPMC w/Dr. Lunsford - 8-5-08
* Stable MRI - Aug. 2009
* 2 MM's Growth - Aug. 2010
* Lost 60% Hearing - Dec. 2010
* More Growth?? - Wait & Watch - Jan. 2012
* 1 MM Shrinkage - Aug. 2012
* 2 MM's Shrinkage - Aug. 2013
* Slight Shrinkage - Aug. 2014

Goldie

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Re: Happy to share good news
« Reply #5 on: February 28, 2012, 10:12:03 pm »
Thanks for all the good wishes. 

Windy, I wish you all the best.  I don't wish surgery for anybody, but it can turn out to be a good thing.  I look forward to seeing your updates.

Denise
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GK 5/06 at Mayo for small AN after balance and slight hearing issues.  Progressive hearing loss following GK.
3/09 - facial spasms began.  MRI shows tumor growth.
9/09 - MRI shows further growth.  "GK failure."  Translab 10/1/09 success!  BAHA 10/8/10.

Larry

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Re: Happy to share good news
« Reply #6 on: March 14, 2012, 12:10:26 am »
Great news Denise,

I would suggest that you may want to have annual MRI's rather than wait 5 years.


Laz
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2.0cm AN removed Nov 2002.
Dr Chang St Vincents, Sydney
Australia. Regrowth discovered
Nov 2005. Watch and wait until 2010 when I had radiotherapy. 20% shrinkage and no change since - You beauty
Chronologer of the PBW
http://www.frappr.com/laz

leapyrtwins

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Re: Happy to share good news
« Reply #7 on: March 15, 2012, 08:35:09 pm »
Excellent news, Denise!

And I'm so happy you love your BAHA  ;D

I'm right there with ya!

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

jaylogs

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Re: Happy to share good news
« Reply #8 on: March 16, 2012, 09:45:46 pm »
Congrats Denise!! That is truly good news!!!!  Isn't it amazing how as time goes by this new normal doesn't seem so bad now? :)  Laz...good advice on more MRI's for Denise, but I have seen all kinds of intervals for MRI's for everyone on here (search for a thread on this, this was asked a while back by someone...quite the wide array of responses)...I myself have had only two MRI's... one pre and one post...so I guess it just all depends on how the post scan looks, what the tumor was like, how much was left...any number of different factors can all go into the frequency of post surgery MRI's.  So I guess unless you have any kind of weird symptoms pop up between now and then Denise...you can ask your doctor! Again...congrats and continue to enjoy your new "normal"! :)
Jay
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8.1mm x 7.8mm x 8.2mm AN, Left Ear, Middle Fossa surgery performed on 12/9/09 at House by Drs. Brackmann/Schwartz. Some hearing left, but got BAHA 2/25/11 (Ponto Pro) To see how I did through my Middle Fossa surgery, click here: http://www.caringbridge.org/visit/jaylogston

Goldie

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Re: Happy to share good news
« Reply #9 on: March 18, 2012, 08:12:36 pm »
Thanks for your comments.  Since I work where I get my care (Mayo), I know I can easily follow up with any concerns I have.  And since there was absolutely no sign of anything on the MRI, I feel comfortable waiting the five years as long as nothing new comes up.  Maybe recommendations for follow-up will change...seems like it does in every medical arena!   
Logged
GK 5/06 at Mayo for small AN after balance and slight hearing issues.  Progressive hearing loss following GK.
3/09 - facial spasms began.  MRI shows tumor growth.
9/09 - MRI shows further growth.  "GK failure."  Translab 10/1/09 success!  BAHA 10/8/10.

Mei Mei

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Re: Happy to share good news
« Reply #10 on: March 19, 2012, 05:09:34 pm »
You're right about the inconsistency of recommendations.   It comes in waves of change.   I just want to congratulate you on your good news.   It's always wonderful to hear!
Mei Mei
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1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh
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