Author Topic: Newly diagnosed  (Read 1225 times)

Colorado Alex

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Newly diagnosed
« on: December 27, 2019, 04:23:23 pm »
Hi everyone.  I’m new to the forum and I really appreciate all the information that is here.  I have a lot of reading to do.

I’m male, 55 and was diagnosed with an AN yesterday.  2.1cm x 1.9cm x 1.4cm.

I’ve had declining hearing in my left ear and a worsening noise in the same ear for several years.  I just attributed it all to ageing.  This year I’ve noticed some balance issues and some numbness in and on my ear and face. 

I have daily headaches that seem to worsen as the day progresses. 

My primary doc sent me to see an audiologist who did an exam and sent me to an ENT.  And now, one horrifically awful MRI later…here I am.

It was a bit surreal to see the MRI up on the screen and see that white blob in my head.   Besides affecting my nerves it is apparently pressing on my brain stem and cerebellum. 

The ENT now wants me to go to the AN team at the University of Colorado Denver.  I live 250 miles west and on the other side of the mountains and hate the trek in the winter.

I am still trying to accept the whole thing.  I definitely have not got my head around this yet but know it will take some time.

The ENT doesn’t want me to wait too long but I need some time to digest all of this.

I think I will take the referral to UC Denver just so I can hear from some professionals that are more expert in AN’s.

Thanks for listening to me and for any advice and support you can give.
Diagnosis 12/26/2019  2.1 x 1.9 x 1.4 cm left side AN, hearing 90%
Daily headaches.
Seeking multiple opinions.  Trying to keep it together until I have a plan.

golfguy49

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Re: Newly diagnosed
« Reply #1 on: December 28, 2019, 08:29:12 am »
You can also get copies of your MRI and send it it to other AN centers around the country for a second/third opinion.  They are all very good about taking a look.  House Ear Clinic, Michigan Ear, and Univ of Iowa are all options you could consider (high-volume AN centers).  You may end up deciding that one of those options is best for you.  One of the best and worst things about this type of tumor is it can often give the patient multiples choices on what to do.  Sometimes I wish I had no choice and only had one option.  Yours is large enough that perhaps you only have a single option, but I wish you the best in your decision and outcome.
March 2018: 10 x 5 x 5 mm AN diagnosed April 2018.  October 2018: 12 x 5 x 5 mm.  Considering surgery in early 2019.
October 2019: 14 x 5 x 5mm.  Surgery scheduled for late Jan 2020.
January 2020:  Surgery at NW Hospital in Chicago area done by Drs. Fishman and Brayton

alabamajane

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Re: Newly diagnosed
« Reply #2 on: December 28, 2019, 03:01:44 pm »
Sorry to hear about your diagnosis,, we have all been there so we are empathetic,,, but you will research and talk and read on here and discuss hopefully with more than one AN team and you will make your decision,,, it’s a journey that we all would prefer not to make but have to,,,

My journey started 11 years ago when I was diagnosed by MRI. I had NO idea I was even having problems related to a tumor,, I had had a seizure so MRI was ordered,, imagine my surprise to hear “ brain tumor” when I visited neurologist for the results,, but I prevailed and so will you,,, I had translab surgery in 2011.

Also send for the free packet of wonderful information from the ANA,, and consider joining. It is a fantastic resource and organization,, there are many booklets that will explain so many things to you. There is also a list of questions to ask your doctors,, very helpful!

 I suggest taking someone with you to the various doctor visits if possible to help you listen and even take notes for you. Believe me,, you will not remember everything they throw at you. So much of it is new terms and info..
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take a deep breath and try to realize you have friends here that will help you through,, Just  ask questions and read , read, read,,,
Peace to you,,,
Jane
translab Oct 27, 2011
facial nerve graft Oct 31,2011, eyelid weight removed Oct 2013, eye closes well

BAHA surgery Oct. 2014, activated Dec. 26

Colorado Alex

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Re: Newly diagnosed
« Reply #3 on: December 29, 2019, 07:38:57 pm »
Thank you both for your comments.  To be honest I’m having a bit of a hard time accepting it at all.  It’s certainly not how I pictured 2020 would start.  I know feeling sorry for myself is not going to help but it’s just tough right now.  I need to figure out how, when and what exactly to tell my kids, family and coworkers.  What a mess.
Diagnosis 12/26/2019  2.1 x 1.9 x 1.4 cm left side AN, hearing 90%
Daily headaches.
Seeking multiple opinions.  Trying to keep it together until I have a plan.

bfoley

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Re: Newly diagnosed
« Reply #4 on: December 30, 2019, 06:07:23 am »
Welcome to the club Alex - No one wants to join, but everyone is friendly!

I would suggest that you read, read, read all you can get your hands on.  The ANA has great information available.  This forum is also a good resource.  There are quite a few papers out there too.

When you go to a consultation, be prepared for them to give you all options (watch and wait, Gamma/Cyber Knife, and surgery), with an emphasis on the benefits of whatever their specialty is.  Think about what your goal is and what option gives you the best chance at that outcome.  For me, preserving face movement was #1.  Balance and dizziness were number 2, tinnitus #3 and hearing was last.  Good thing as all service able hearing was lost in 4 months.  I went from 95% word recognition in January to basically nothing in April.

Let us know how you progress with your decision.  Wishing you all the best.

Enri

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Re: Newly diagnosed
« Reply #5 on: December 30, 2019, 12:59:40 pm »
Sorry to read about your diagnosis but welcome to the club.  Whatever you do it it is important to make sure that you consult doctors that are experts on ANs.  I chose surgery and waited only about a year from diagnosis.  I had retrosigmoid at Houston Methodist with Drs. Britz and Vrabec.  My AN was smaller than yours.  I have the same symptoms post-surgery than before, namely partial hearing loss in affected ear and some tinnitus.  Some people choose radiation.  It is a matter of finding what is the right decision for you considering your tumor.  Hang in there.
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Diagnosed Oct. 2015 - mild tinnitus, partial hearing loss - Right ear
1.5 cm x 0.8cm
Retrosigmoid Nov 2016 - Houston Methodist - Drs. Vrabec and Britz

jami

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Re: Newly diagnosed
« Reply #6 on: December 31, 2019, 12:23:46 pm »
HI Alex,

Glad you found the ANAUSA site. I remember spending many hours looking for help online after diagnosis as well (and the shock of that first MRI).  My story is almost exactly like yours, with an emphasis on the balance side (thought I was getting older) + facial numbness.

The forum here is awesome too, I have learned so very much from everyone.

The webinars are great, if you join the ANA. I strongly recommend watching some of the webinars. My favorite is "The Patient Centered Approach to Acoustic Neuroma".

Much virtual support!

Jami
Jami
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5/17/18: 2.7 x 2.2 x 2.1cm
8/12/18 right retrosigmoid craniotomy @UNC
8/15/18: 1.0 x 0.4 x 0.4 cm
3/04/19: 1.0 x 0.8 x 0.5 cm
4/23/19 Cyber Knife treatment
10/23/19 0.7 x 0.3 x 0.8 cm

lablove

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Re: Newly diagnosed
« Reply #7 on: December 31, 2019, 05:10:14 pm »
Hi Alex, Sorry to hear about the diagnosis & your new role as a patient. As far as talking with your family & friends, being completely open & authentic has worked for me. I had a freshman in college and a freshman in high school at diagnosis. The kindness of others has been amazing & my faith has given a peace that defies really any understanding. It is just really hard to be a brave fighter & stay positive. I am hoping you have some good people around you...and know we are all here to support. ~Colleen

 


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