Author Topic: 1 Year Anniversary Today - A message of hope  (Read 4663 times)

v357139

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1 Year Anniversary Today - A message of hope
« on: November 20, 2014, 09:30:35 pm »
Today is my one year anniversary of having my 3.5cm removed.  I had a great result, and I am doing excellent.  I want to celebrate it here on the forum, where I have gotten so much support.

But more than just celebrate, I want to give a message of HOPE to all those newly diagnosed who are struggling with their decision or worrying over their choice.  I struggled with my choice for almost a year, and was a basket case, to put it mildly.  I may have set the record for worry.  It dragged me lower than I had ever been.  In retrospect I see I was trying to control every aspect of this highly complex thing, and that was just not possible.

So to the  newbies I say, I had a big one, and I had a great result.  Lots of others have had great results also.  There are more good results than bad.  You will probably have a great result also.   Don't try to control every variable, that is impossible.  Focus on the few most important things, and make a choice consistent with them.   Choose from highly experienced surgeons with great track records.  That does not give you a guarantee, but it does give you a great chance.

Some days I never thought I'd make it to the other side.  I did, and you will too.  God bless and good luck.  Feel free to PM me if you are worrying, as I know exactly what you are going through.
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!

CHD63

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Re: 1 Year Anniversary Today - A message of hope
« Reply #1 on: November 21, 2014, 07:48:59 am »
Thank you for your excellent message of encouragement and hope for newly diagnosed or recently treated patients.  We need to remember that many patients with great outcomes never come to this forum or to the Facebook groups.  Some of us, like you, are staying on here to do what we can to reassure others coming after us on this journey with an acoustic neuroma.

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

jaylogs

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Re: 1 Year Anniversary Today - A message of hope
« Reply #2 on: November 21, 2014, 01:19:06 pm »
Thank you for sharing your story with us!  It's always good to have the posties come back and let us know how things are and to share with those who are just now starting down this road for themselves.  I always say that once you make  your decision, just sit back and let someone else drive because you are definitely not in control anymore!  :)
Jay
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

v357139

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Re: 1 Year Anniversary Today - A message of hope
« Reply #3 on: November 21, 2014, 07:49:28 pm »
Thank you Clarice and Jay!!  It's true there are so many more good stories that never make the forum.  It's easy to forget that.  You folks who run this forum do such an excellent job.  God bless you all.  I'll be around, to help with the positive.

Have hope you worriers.  We made it, and so will you!!! :)
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!

minerva1221

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Re: 1 Year Anniversary Today - A message of hope
« Reply #4 on: November 24, 2014, 08:40:22 am »
Thanks for posting this.  The timing was perfect and just what I needed to read right now to remember there ARE lots of positive outcomes.  I have every hope of being one of them!!   ;D
Mid 2013:  high-frequency hearing loss, tinnitus, vertigo/balance issues, fullness in ear
Aug 2014 (age 39):  diagnosed with 4mm x 6mm x 8mm AN
Nov 25, 2014:  Middle Fossa Surgery at UTSW with Dr Kutz & Dr Mickey
 - 6 months post-op still battling fluctuating vision issues

v357139

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Re: 1 Year Anniversary Today - A message of hope
« Reply #5 on: November 24, 2014, 07:56:18 pm »
Lots of good outcomes.  I am sure you will be one.
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!