Author Topic: Reintroducing myself in new thread  (Read 6986 times)

TaraT

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Reintroducing myself in new thread
« on: February 23, 2009, 02:12:07 pm »
I posted in another thread and wanted to reintroduce myself.  Thanks to Steve, SteveK and Mitch for your comforting words.  SteveK and Mitch -- It is nice to hear about your experiences in Pittsburgh.  Steve -- I love the hat!

I had been lurking around here for over a week and got up the courage to post and here is my story:  My name is Tara and live in Somerset, PA.  I am 38.  I was diagnosed with a right-sided 2 cm AN on 1/7/09.  I was referred to Dr. Chen in Pittsburgh.  I was told by my ENT that he is one of the best.  He is wonderful.  On Thursday, I have to go to the Pittsburgh Hearing and Balance Institute for some testing.  I am meeting with Dr. Aziz later in the day.  I am going to have translab surgery and it is scheduled for 3/24/09 at Allegheny General Hospital.  This whole diagnosis was a bit of a shock.  I have never heard of it before.  It is kind of weird though because when you start talking about it you find more people that have heard of it.

Prior to being diagnosed, I had ringing in my ear for about 2 years and slight hearing loss.  I thought it was because at the time I was doing medical transcription.  In 10/08, my tongue got tingly and the family doctor said it was nothing.  I went to an ENT in 12/08 and told her about my tingly tongue and the right side of my face was a little numb and she sent me for an MRI and here I am.  The decision for translab sounded to be the best option for me. 

29 days and counting.  My family has been great.  Everyone is going to help out with our 10-year-old.  He is really my greatest concern.  As long as he is taken care of is all that really matters to me.  I pretty much just told him I have to have surgery and I won't be able to hear out of my right ear and he will have to speak up beause he loves to mumble.

Well, I look forward to getting to know all of you.  Take care! 

Tara
1/7/09 2 cm AN diagnosed
3/24/09 Translab surgery
Dr. Chen and Dr. Aziz, AGH, Pittsburgh, PA
SSD right ear
Facial paralysis right side 3/6

Kaybo

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Re: Reintroducing myself in new thread
« Reply #1 on: February 23, 2009, 03:21:49 pm »
Welcome, Tara, to the little group that no one WANTS to be part of but is wonderful none the less!  I know it is a bit shocking at first, but it will all turn out OK in the end!  Feel free to ask any questions here - we are very open to ANYTHING and just really want to help you make it thru this journey!

K
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!

lori67

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Re: Reintroducing myself in new thread
« Reply #2 on: February 23, 2009, 03:39:39 pm »
Hi Tara and welcome.

Sounds like you've had a lot thrown your way all at once, huh?  I've been there!  I'm glad to hear your family is being so helpful and I'm sure your on will do okay.  I have 4 kids and they all seem to have survived Mom's trauma.  My 17 year old son tends to mumble too, so if nothing else, I've broken him of that habit a bit.  He knows I can't hear him, so if he doesn't want to have to keep repeating himself, he'd better say it clearly the first time!!

I have a niece named Tara - she was only 1lb at birth - and now she's in the Marine Corps - so Tara's are fighters!   ;)

Hang in there and keep us posted!
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.

Syl

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Re: Reintroducing myself in new thread
« Reply #3 on: February 23, 2009, 03:41:58 pm »
Tara:

Welcome!
I didn't know either what an AN was until I got one. It has certainly changed my life. Change can be good or bad. I choose to make mine good. There are good days and there are bad days. But as time passes, the good one outnumber the bad.

I too look forward to getting to know you, and you will find that there is an immense amount if information and experiences to be shared on this forum.

Take care.

Syl
1.5cm AN rt side; Retrosig June 16, 2008; preserved facial and hearing nerves;
FINALLY FREE OF CHRONIC HEADACHES 4.5 years post-op!!!!!!!
Drs. Kato, Blumenfeld, and Cheung.

cindyj

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Re: Reintroducing myself in new thread
« Reply #4 on: February 23, 2009, 03:56:37 pm »
Hi, Tara!  Welcome to the site.  You've already taken care of what most of us thought was the hardest part of this whole AN thing,  making your treatment decision and scheduling your surgery!  If you have any questions as you wait for Mar 24th, do let us know.  We'll help as best we can.

Good luck and hope you'll stick around with us,

Cindy
rt side 1.5 cm - Translab on 11/07/08 Dr. Friedman & Dr. Schwartz of House Ear Institute,
feeling great!

"Life consists not in holding good cards, but in playing well those you do hold."  Josh Billings

LADavid

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Re: Reintroducing myself in new thread
« Reply #5 on: February 23, 2009, 05:06:42 pm »
Hi Tara -- welcome from an old Pittsburgh boy.  As I mentioned in the other thread, I was born in AGH -- just about the time you're having surgery -- 60 years ago.

You found a good place here for advice and support.  I had a Translab too.  And as dad who has had hearing problems for 20 years, I have raised a 26 yo daughter who developed a booming stage voice -- she had to compensate over the years.

You'll also find on the Forum a number of young parents who had surgery -- they can give you help on how to deal with children as you go though the surgery and recovery.

Best wishes -- we're all here to help.

David
Right ear tinnitus w/80% hearing loss 1985.
Left ear 40% hearing loss 8/07.
1.5 CM Translab Rt ear.
Sort of quiet around here.
http://my.calendars.net/AN_Treatments

LADavid

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Re: Reintroducing myself in new thread
« Reply #6 on: February 23, 2009, 05:09:26 pm »
BTW, please make sure to put your surgery date on our calendar -- you can find the link on my signature line down there:
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Right ear tinnitus w/80% hearing loss 1985.
Left ear 40% hearing loss 8/07.
1.5 CM Translab Rt ear.
Sort of quiet around here.
http://my.calendars.net/AN_Treatments

mimoore

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Re: Reintroducing myself in new thread
« Reply #7 on: February 23, 2009, 05:18:50 pm »
Welcome Tara!
Glad you found us... sorry you have an AN. We understand and are here for you.
Michelle  ;D
Retrosigmond surgery on June 4th, 2008 for an AN. 100% hearing loss and facial paralysis (was not prepared for facial paralysis). Size: 2.3 cm, 2.1 cm, 1.8 cm. some tumour remains along facial nerve. Pray for no regrowth. Misdiagnosed for 10 yrs.

texsooner

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Re: Reintroducing myself in new thread
« Reply #8 on: February 23, 2009, 05:55:22 pm »
Tara, welcome....sounds like you're well on your way having already gotten your diagnosis, surgery technique, and surgery date.  I'm sure you'll do well. Ask any questions on this site. There's a great group of people here who can help or point you in the right direction.

Patrick
3.5cm left side AN; 11 hour retrosigmoid surgery 8/11/08 @ Memorial Hermann, Houston - Texas Medical Center with Drs. Chang and Vollmer; home on 8/13/08;
SSD(w/tinnitus); dry eye; Happy to be here and feeling good.

TaraT

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Re: Reintroducing myself in new thread
« Reply #9 on: February 24, 2009, 09:29:31 am »
Thank you so much for the welcome everybody.  I was grinning from ear to ear when I saw all of the support.  You guys are great.  It is a terrible bump in life and it is so nice not to do it alone.

Tara
1/7/09 2 cm AN diagnosed
3/24/09 Translab surgery
Dr. Chen and Dr. Aziz, AGH, Pittsburgh, PA
SSD right ear
Facial paralysis right side 3/6

Jim Scott

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Re: Reintroducing myself in new thread
« Reply #10 on: February 24, 2009, 03:42:15 pm »
Hi, Tara:

Forgive my tardiness at responding to your introductory post.  I'm pleased to learn that you seem to have things well in hand.  We've all been through the initial shock and awe at finding out that we have a benign tumor in our head.  However, as you can see, many folks have been through this and come out just fine.  The surgery has risks, as all surgeries do, but it's necessary and effective.  I underwent both surgery and radiation, and I did just fine.  I was also a quite a bit older than you but suffered no complications or ill effects from the surgery or the subsequent radiation.  I trust you'll have a similar experience. 

Please consider this site and these forums as a resource and the folks that post here as family.  We want to help in whatever way we can - and no question is dumb.  :)

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.

Seal

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Re: Reintroducing myself in new thread
« Reply #11 on: February 24, 2009, 04:34:00 pm »
Hi Tara,

Welcome and congratulations in joining this friendly and very exclusive club!    Your diagnosis time frame, size of AN, and the urgency of treatment is almost a mirror to me.     I don't have the added stress of childcare because my wife is a whizz at keeping things organized around the house for our three kids.  Of course she is an accountant too so that goes with the territory!     However, just like you mentioned, we have had extraordinary support from the extended family, close friends, neighbors, etc etc.     To say that these offers of help are heart warming is a gross understatement.       I've been near tears with some of the offers of support.      I'm sure that your 10yr old will be fine and probably entertained pretty well throughout your recovery period.    Good luck and relax; spring is right around the corner.    Before you know it, we will be with the kids at the beach this summer.

Good luck and best wishes,
Steve
Diagnosed 1/14/09 - 2.4cm AN right side --- about 70% cycstic
Retrosigmoid wiih McKenna & Barker - total removal successful on April 13th. 
Issues: balance, facial & mouth numbness, hearing loss right side
Results:   numbness gone, balance is good, SSD right side. Great results.

leapyrtwins

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Re: Reintroducing myself in new thread
« Reply #12 on: February 24, 2009, 04:36:13 pm »
Hi, Tara  ;D

Nice to meet you!  Sorry about the AN.

My twins were 11 when I had my surgery - they'll be 13 this weekend - and they did quite well with it.  I found that one of the best ways for them to cope was to keep them busy and have lots of family there for them; sounds like you've already figured that part out  :)

My surgery left me SSD and I found that I just couldn't cope with the mumbling - both at home and at work - so I had a BAHA implant.  It was one of the best health care decisions I ever made.  So if you find that SSD isn't for you, don't hesitate to look into options.

Also, please don't hesitate to ask us anything.  Most of us have been in your shoes, and we always have a lot to say  :D so don't be shy!

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

bleavitt

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Re: Reintroducing myself in new thread
« Reply #13 on: February 25, 2009, 09:29:12 am »
Tara;

Our situations are very similar, if there is such a thing with AN's. I had a similar sized AN on my right side, I'm a 39 year old male, married, no kids. It was removed 1/16/09 with translab, by Dr. Kartush at Michigan Ear institute.

My recovery was nothing short of remarkable; Out of the hospital in three days, I was at work (desk job) in two and a half weeks, full time in three. I was able to again pursue my passion, downhill skiing three weeks to the day! I hope you have a similar recovery. If your doctor has you doing any eye excerises, make sure you do them. Go into this with a positive attitude, set goals for your stages of recovery, and have a great support systme at home.

There will be fatique, nothing you can do about that other than listen to your body. Single sided deafness isn't that big of a deal, it's a little fustrating in resturants, etc. but overall it's not a big deal. I know you'll do great!

Feel free to contact me with any questions, good luck!

anissa

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Re: Reintroducing myself in new thread
« Reply #14 on: March 03, 2009, 12:15:06 am »
Welcome Tara!  I was diagnosed 3 weeks ago with a 2.1 AN and will be having translab on April 1st in Salt Lake City, UT.  I look forward to getting to know you more.  Its a little frightening for things to be moving this fast but at the same time I'm relieved to be moving forward, lessens the worry time, you know?  I'm sorry that we have this but I'm glad to know other people to share it with.  Best wishes.
Anissa
2/11/09 Diagnosed AN 2.1cm
2/26/09 Consult with Dr. Clough Shelton, U of Utah
4/1/09 Translab with Shelton & Couldwell
--little teensy bit of tumor or cells on facial nerve, stuck! No facial weakness, Rt side SSD
4/8/10 1-yr MRI, "Looks great!"