Author Topic: New here, new to AN  (Read 6522 times)

anissa

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New here, new to AN
« on: March 01, 2009, 04:18:11 pm »
Hello, am I glad to have found you all!  I hope this is the right forum for this note, if not please feel free to move it. 

My name is Anissa, I'm 39 and live in Idaho.  I'm married with 4 kiddos (ages 5, 5, 3, and 1).  I was diagnosed with an AN 2.1cm about 3 weeks ago.  Last Thursday I had a consultation with my neurotologist, Dr. Clough Shelton from the University of Utah.  Surgery is forthcoming but I don't have a date yet.

Just wanted to introduce myself and say that I'm looking forward to getting to know all you fine folks.  I have so many questions but I'm going to spend some time reading here before I start asking. 

So..."Hi!"
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!"

Kaybo

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Re: New here, new to AN
« Reply #1 on: March 01, 2009, 04:32:18 pm »
Anissa~
So glad to see you here!!  Welcome!  Feel free to ask anything - we are a VERY open group & just want to help others. I know that this is a group that you don't want to be a part of but you won't find a better group of people!! Did you get my e-mail? If not, I can PM my info to you here!!

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: New here, new to AN
« Reply #2 on: March 01, 2009, 04:41:08 pm »
And Hi back, Anissa!

Welcome!  We're ready for your questions!  Fire away!!   ;D

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.

nancyann

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Re: New here, new to AN
« Reply #3 on: March 01, 2009, 04:43:41 pm »
Hi there Anissa:  What a thoughtful introduction !  Like K said, we're all here to help.  Sounds like you're taking the right steps with your neurologist, & finding the treatment that's right for you.  Since you have a 2.1cm AN,  seems like the decision is between surgery or radiation.  
We're all here to help.
Always good thoughts,  Nancy
« Last Edit: March 01, 2009, 05:00:13 pm by nancyann »
2.2cm length x 1.7cm width x 1.3cm  depth
retrosigmoid 6/19/06
Gold weight 7/19/06, removed 3/07
lateral tarsel strip X3
T3 procedure 11/20/07
1.6 Gm platinum weight 7/10/08
lateral canthal sling 11/14/08
Jones tube insert right inner eye 2/27/09
2.4 Gm. Platinum chain 2017
right facial paralysis

nteeman

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Re: New here, new to AN
« Reply #4 on: March 01, 2009, 05:11:14 pm »
Greetings and best of luck to you.  I had a 2.4cm AN removed on 1/27/09 and had a pretty smooth recovery so far, except for the deafness of my left ear. I recommend you get as much info and ask your doctors as many questions as you can. You will get some great information here on this forum and the folks here are great for support as well. Pleas keep us all posted.

Cheers
Neal
Diagnosed 12/16/2008
AN 2.4 X 2.0 X 1.6 CM
surgery performed on 1/27/2009 Mt. Sinai Hospital, NYC
Dr.Bederson & Dr. Smouha
9:30am thru 5:50pm
http://www.facebook.com/neal.teeman

MAlegant

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Re: New here, new to AN
« Reply #5 on: March 01, 2009, 05:48:54 pm »
Hi and welcome,
I hope you find what you're looking for here--I know I did.  Ask anything, we'll all chime in.
Be well,
Marci
3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.

texsooner

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Re: New here, new to AN
« Reply #6 on: March 01, 2009, 05:58:41 pm »
Hi Annisa, let me throw out my welcome along with the others. You've got a great group of people on this forum willing to share their many different experiences....so don't be afraid to ask any questions.

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.

Syl

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Re: New here, new to AN
« Reply #7 on: March 01, 2009, 06:22:17 pm »
Anissa:

Welcome!! Can you share with us how your AN was discovered? Was it by accident or did you have symptoms, such as hearing loss, dizziness, facial weakness that made you go to the Dr?

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.

sgerrard

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Re: New here, new to AN
« Reply #8 on: March 01, 2009, 08:55:53 pm »
Hi Anissa,

I took a look at your website blog, using that little world icon under your name (hint hint).

I of course had to look at your MRI pic as well. FYI, 2.1 cm is a little less than an inch (1 inch = 2.5 cm). I think that is a little smaller than a ping pong ball, but bigger than a malt ball. And the MRI pics are from below your head looking up, not from on top, and from the front, not the back, which is why your right side is on the left side of the picture (just like in regular pictures when you think about it).

I have to say, you seem to be right on top of the whole business, considering you were diagnosed less than a month ago. Welcome to the forum!

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

Kaybo

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Re: New here, new to AN
« Reply #9 on: March 01, 2009, 09:19:55 pm »
Look at you go, Steve - I got it & clicked onthe world!!

;)
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!

Keeping Up

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Re: New here, new to AN
« Reply #10 on: March 01, 2009, 09:41:38 pm »
Welcome Anissa

I am a somewhat older newbie (diagnosed way way way back in Dec '08) and also a mom of four little ones.  (I willl assume your older pair are twins, but not necessarily - have met otherwise).  I don't have twins - but somehow ended up with four regardless - 6, 5, 3 and 1.  I also have a AN - but a teeny weeny one, and so get to do nothing but fret way way too much.

Ask questions - someone will have a perspective/advice.   I find the world of AN treatments conflicting - you may be somewhat 'lucky' (really don't mean it that way) as you might be borderline grew yourself out of radiation.  (but the tumor can be larger for radiation too - but again, that is way beyond my ability to comment ... start asking questions, others do have much more insight to me).

Good luck, welcome to the gang, deep breathe!

Ann

PS - Steve you are good - I just added my blog, and had NEVER noticed the little 'world' on the right side!
dx Dec/08 - 5mm x 8mm AN
'watch and wait'

anissa

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Re: New here, new to AN
« Reply #11 on: March 01, 2009, 09:57:02 pm »
Ok, Steve, thank you so much!  I really needed the size of an object, something I can hold in my hand to help me visualize how big it is.  That helps!  And the MRI pictures, that is weird how that works but it makes sense now.  I had to go back and look at my MRI to figure it out.  That technology really is amazing.  I am an Internet/research junkie, you know, knowledge is power and all that.  

I started pursuing answers after 2 months of trouble hearing and a feeling of being off balance.  Tinnitus started between the 3rd and 4th months.  I don't have any facial paralysis at this point but my hearing and more so word discernment decrease with every hearing test.  I am starting to feel anxious and really want to get this overwith ASAP.  Every ache and pain has me wondering if the tumor is going to kill me, but then I do tend to overthink things sometimes.  
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!"

leapyrtwins

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Re: New here, new to AN
« Reply #12 on: March 01, 2009, 11:02:41 pm »
Hi, Anissa  ;D

Love your blog - thanks to Steve for the clicking on the world hint - as otherwise I would have had no clue  :D

I just want to clarify two things:

1) an acoustic neuroma of 2.1 cm is generally not classified as "large" - it's more like medium and 2) there is something you can do for SSD (single-sided deafness).

Since you are a self-confessed internet junkie, I won't give you the specifics, but search on BAHA.  I have one - as do several others on the forum - and they are amazing.  You should also search on TransEar - another option for SSD.

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

anissa

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Re: New here, new to AN
« Reply #13 on: March 01, 2009, 11:36:49 pm »
About the AN size, I know!  That's what I thought.  I classified it as a med but my Dr. classified it as a large because it was pressing on my brain.  Does that matter?  I was not expecting him to say that. 

And, I wrote that note after my Dr. appointment last Thursday and didn't find this forum until today so I didn't know about the BAHA until a few hours ago.  I was just telling my husband about it and we're both relieved that there is an option if the SSD is too annoying.  I am going to search for both the BAHA and the TransEar, thank you! 
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!"

moe

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Re: New here, new to AN
« Reply #14 on: March 01, 2009, 11:38:47 pm »
Welcome! I am new too, but not to AN. Would love to give my 2 cents worth whenever I can.
Maureen
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty