Author Topic: Old timer returns to the Forum (briefly)  (Read 3358 times)

leapyrtwins

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Old timer returns to the Forum (briefly)
« on: August 27, 2016, 02:33:01 pm »
Haven't been on the Forum in ages, I'm an old timer now (almost 10 years post op with no regrowth) doing well and living my life.  Still very happy with my choice of surgery (retrosigmoid) and my decision to get a BAHA implant (upgraded to a Cochlear BAHA 5 last year and it rocks).  Still think my docs, Robert Battista & Robert Kazan, are two of the very best. 

Have answered many PMs and emails from members since I've been off the Forum, so just want to encourage anyone who wants to contact me to feel free to do so.  Always happy to share my insights and my experience.

Best,

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

andrea in slc

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Re: Old timer returns to the Forum (briefly)
« Reply #1 on: August 29, 2016, 09:00:33 pm »
Hi Jan

I remember seeing you on here when I was first diagnosed 8 years ago!  Guess that makes me an old timer too?  ;) I'm glad you are doing well, it's so nice to hear with these darn tumors!

Unfortunately, I'm in the "lucky" 2% with regrowth, even after translab surgery. So I'm looking at optioms again. I did tell my husband we should go to Vegas because apparently "the odds are ever in my favor!" ;D

Anybody know how Patti in UT is doing? I have lost her email.

Hope all continues to go well for you Jan!!  :)

leapyrtwins

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Re: Old timer returns to the Forum (briefly)
« Reply #2 on: August 30, 2016, 09:24:25 am »
Hi, Andrea.  I remember you, too - and yes, you are officially an old-timer  ;D

I'm sorry to hear you're one of the "lucky" 2%.  In the past few years I've heard of several people who have had regrowth, although some of them originally had radiation not surgery. 

The last time I checked (had an MRI) was 4 1/2 years ago and at the time I was still "clean".  I'm due for an MRI @ my ten year ANniversary, so I'll know more then.

Don't have any contact info for Patti in UT, but there are several AN groups on Facebook.  Seems like the majority of us have migrated there; most people I met on this Forum haven't been here in ages. 

Good luck in Vegas; hope you win big  ;)

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

rupert

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Re: Old timer returns to the Forum (briefly)
« Reply #3 on: August 30, 2016, 06:48:20 pm »
I don't actually "make" trouble..........    Hahahahahahah   ;)

v357139

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Re: Old timer returns to the Forum (briefly)
« Reply #4 on: September 02, 2016, 08:03:12 pm »
Congratulations on your ten years!!! I remember reading many of your posts several years ago.  Keep magnifying trouble, I think its working.
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!!

leapyrtwins

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Re: Old timer returns to the Forum (briefly)
« Reply #5 on: December 29, 2016, 11:57:43 am »
I don't actually "make" trouble..........    Hahahahahahah   ;)

I was given that quote by a fellow ANer - Tim Billings - because of my tendency to "hijack" threads (get off topic) and because of my interactions with my partner in crime on the forum, Lori Wilson.  Lori and I created the Official BAHA Recovery Kit and she's a close AN friend.  When I upgraded to my BAHA5 last year I gave her my BP100 since her device had issues, was no longer under warranty, and her insurance wouldn't cover a new one. 

At one point the Forum was our life, but life goes on.  The friendships have continued, thankfully, but the majority of us have no burning desire to still talk about our ANs.  As a result, most of us have since moved on to Facebook. 

But, I'm "lured" back here on occasion when someone sends me a PM and I decide to check out the posts.

Jan
« Last Edit: December 29, 2016, 12:00:29 pm by leapyrtwins »
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

v357139

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Re: Old timer returns to the Forum (briefly)
« Reply #6 on: December 29, 2016, 07:39:10 pm »
Well it was glad to hear from you.  You were a long timer when I was just a newbie.  And you have a great story to tell, which the forum always needs.  All the best to 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!!

sharonov

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Re: Old timer returns to the Forum (briefly)
« Reply #7 on: December 30, 2016, 02:51:12 pm »
Jan. you were very helpful to me during my last bout with trigeminal neuralgia in....2012?  I briefly considered going to Shahinian, then talked with Friedman, attended a conference, and then the trigeminal neuralgia went away!  In my blissful ignorance I thought it was a fluke.  When it returned in all its hideous splendor I went back here and decided to go to L.A. and have it done at the House Clinic by Schwartz.

Anyhow, glad you were there to talk with way back then.  Your twins must be young adults by now--I now have three grandkids.  Thanks again.

jaylogs

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Re: Old timer returns to the Forum (briefly)
« Reply #8 on: December 31, 2016, 09:13:38 am »
Jan!! How the heck are you doing?  It has indeed been a long time!  Glad to hear you've been doing well.  For the most part I've been doing ok.  I had so many issues with my implant, with the skin around it. FINALLY, after a third round of surgery we got it healed right up and now zero issues!  I've been dealing with a couple of other things, but nothing major.  Yes, it's been seven years now since my own wonderful journey into all of this.  Anyways, it was great to see you again, hope you've had a great holiday season and that the coming new year will treat you well!
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

 


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