Author Topic: Beginning Stages and Questions  (Read 3866 times)

InnerGrace

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Beginning Stages and Questions
« on: April 30, 2016, 12:14:26 pm »
It is now just about two full days since I've learned of my 2.4 cm growth in my head.... (gives a whole new meaning when I say, "I have a lot on my mind"...;) )  I'm on the upswing of being positive, accepting and a desire to just move ahead and deal with this "head" on....lol  Sorry.  It's how I'm dealing....humor.   I feel it's probably going to be a bit before I get a chance to ask five thousand questions of my neurotologist so just out of curiosity, my MRI report states this:  "blah blah blah 2.4 mass with intracanalicular extension of approximately 1 cm.".... Okay.. so I'm assuming that the extension means that the tumor has now grown into my ear canal?  Just curious if anyone has anything that can enlighten me to what the extension of 1 cm means, if there is anything significant in that part of the diagnosis... 
Diagnosed 4/28/2016
2.4 x 2.0 x 1.9 cm AN
Symptoms:  Mild Hearing Loss, Mild Tinnitus, Mild Balance Problems, Possible Vision Issues, Some Vertigo.
Retromastoid Craniectomy 05/30/2016. UPMC Presby
Dr's Gardner and Hirsch
Left SSD. HB 6 Facial Paralysis.  Waiting for the nerves to wake up...

CHD63

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Re: Beginning Stages and Questions
« Reply #1 on: April 30, 2016, 02:25:17 pm »
Hi InnerGrace and welcome to our rather special group!

If you have not already done so, please send for the free ANA materials.  See:  https://www.anausa.org/component/rsform/form/20-ana-contact-us-copy  These materials contain a wealth of accurate information and much reassurance.  Also, check out the questions for physicians:  https://www.anausa.org/pretreatment/questions-for-your-physician

Usually an intracanalicular extension means the tumor has grown out of the internal auditory canal (IAC) toward the brainstem.  The cochlea is the opposite direction, between the IAC and the ear canal.

Many thoughts and prayers as you walk through this decision-making process!

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

PaulW

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Re: Beginning Stages and Questions
« Reply #2 on: April 30, 2016, 03:44:32 pm »
Measuring and reporting Acoustic Neuromas is a little confusing.
My tumour is 14x 6 X 8mm and is mostly inside the internal auditory canal (intracanalicular)
Strangely if it continued to grow another 7mm it would not be reported as a 21mm tumour.
It would become a 11x11x11mm tumour with a 10mm intracanalicular extension..
Once a tumour reaches 10mm outside the internal auditory canal they will report on the size outside the canal seperately. Most acoustic neuromas start inside the internal auditory canal.. So the extension which they describe is actually where the AN most likely began.
The term "extension" is really just describing what they see.
A large proportion of people with ANs have an "intracanalicular extension"
Hope that gobbledegook made sense
10x5x5mm AN
Sudden Partial hearing loss 5/28/10
Diagnosed 7/4/10
CK 7/27/10
2/21/11 Swelling 13x6x7mm
10/16/11 Hearing returned, balance improved. Feel totally back to normal most days
3/1/12 Sudden Hearing loss, steroids, hearing back.
9/16/13 Life is just like before my AN. ALL Good!

arizonajack

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Re: Beginning Stages and Questions
« Reply #3 on: April 30, 2016, 04:01:00 pm »
It is now just about two full days since I've learned of my 2.4 cm growth in my head.... (gives a whole new meaning when I say, "I have a lot on my mind"...;) )  I'm on the upswing of being positive, accepting and a desire to just move ahead and deal with this "head" on....lol  Sorry.  It's how I'm dealing....humor. 

That's good. Read my story (at the link below) and you'll see that I have often injected humor into my situation as well.
3/15/18 12mm x 6mm x5mm
9/21/16 12mm x 7mm x 5mm
3/23/15 12mm x 5.5mm x 4mm
3/13/14 12mm x 6mm x 4mm
8/1/13 14mm x 5mm x 4mm (Expected)
1/22/13 12mm x 3mm (Gamma Knife)
10/10/12 11mm x 4mm x 5mm
4/4/12 9mm x 4mm x 3mm (Diagnosis)

My story at: http://www.anausa.org/smf/index.php?topic=18287.0

Sheba

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Re: Beginning Stages and Questions
« Reply #4 on: May 02, 2016, 05:24:04 pm »

Hi - @ PaulW -
I am not following this from your post above:
My tumour is 14x 6 X 8mm and is mostly inside the internal auditory canal (intracanalicular)
Strangely if it continued to grow another 7mm it would not be reported as a 21mm tumour.
It would become a 11x11x11mm tumour with a 10mm intracanalicular extension..

Is there a link to something that explains how this works,
I thought they just check if the largest diameter (usually the AP one, back of head to front of head) got bigger each time.  (and that there is discussion that the whole sizing thing should switch to "volume" not a single linear measure, but the software tools are not ready yet to make that easy)

Sounds like you are saying they recheck each measure, and add the increments together?  still I don't follow your example, thanks for any clarifications !  (I've only had my initial MRI so far, a few weeks ago.)

Sheba
Diagnosed 4/2016 1.4cm AN.  Mild hearing loss and tinnitus.
Removed 7/2016 at Keck, Drs. Freidman and Giannotta, Retrosig approach.  Lost hearing in AN ear, but no other negative outcomes.  Will investigate bone anchored hearing devices.