Author Topic: 29 yrs old, just diagnosed with a large AN and am terrified  (Read 4077 times)

canyongirl

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29 yrs old, just diagnosed with a large AN and am terrified
« on: December 11, 2012, 10:15:53 am »
I am a 29 year old mom to 6 kiddos, I just found out I have a 22mm AN, I am seeing Dr Clough Shelton in SLC Utah (if anyone has experience with him I'd love to know) he told me that translab is the best option because of the size and position of the tumor.  It is pressing on my brain stem. I have a surgery date set for Jan 14. I  am really nervous. I will lose all hearing in my right ear which makes me really sad since I still have good hearing in that ear.  I have found information on The skull base Institute in CA.  They say they do a fully endoscopic removal which does not have the side effects of other surgery options. Here is the link:  http://www.skullbaseinstitute.com/acoustic-neuroma/

Does anyone have any information on this?  Thanks
Stephanie in Utah
diagnosed Nov 2012
22mm right side AN
Will have translab surgery on Jan. 14 with
Dr Clough Shelton

lrobie

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Re: 29 yrs old, just diagnosed with a large AN and am terrified
« Reply #1 on: December 11, 2012, 12:39:51 pm »
Welcome to the ANA Forum!  I'm sorry to hear you have been diagnosed with an AN.  Do a search for messages from member "Pajamas".  I believe she went to the Skull Based Institute and had that type of surgery.  You can also do a search of Dr. Shelton in the upper right corner of this page.

Lisa
6/2009 7mm x 4mm  W&W
8/2011 9.5mm x 5mm
2/2012 UPMC Follow-up , slight growth
Surgery on 7/18/12 w/Drs. Friedman & Schwartz (mid-fossa)
www.caringbridge.org/visit/lisarobie

LisaM

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Re: 29 yrs old, just diagnosed with a large AN and am terrified
« Reply #2 on: December 11, 2012, 04:26:24 pm »
Hi there canyongirl... take a deep breath.  If you have to have a brain tumor this is the one to have.  You have 6 kids and you need to take your time and do some research on what treatment will best work with your life.  A tumor of 22mm is not that big.  It's not that small either but you most likely have time to think about this.  Right now you are "terrified" which is a pretty normal reaction to hearing about a brain tumor pressing on your brain stem.  I got the same news in April 2011 and had the same reaction.  You don't want to make any decisions that are made out of fear.

Questions for you:

What are your symptoms? 
Do you have balance issues?
What is the age of your youngest child?

Slow down... unless you are experiencing life threatening symptoms or you are unable to function you have time.  I explored having surgery with Skull Base Institute and also at House Ear Institute.  I opted for wait and watch which is working for me so far.  I have a 6 year old, only one child but, I know that feeling of being a terrified mom.  And I am sure you will hear from plenty of other moms on this wonderful forum.  Feel free to email me directly if you need to talk.

Hang in there!  It is not as bad as you think.
Lisa M
Wait & Watch
1st Symptom Temporary SHL 7/10 AN Diagnosed via MRI 4/14/11
AN Size 4/14/11 = 1.4cm x 1.8cm x 1.7cm
AN size 7/14/11 = Same - Stable, no growth
AN Size 2/01/12 = 1.3cm x 1.3cm x 1.6cm (5mm reduction)
AN Size 11/27/12 = less than a centimeter! (50% reduction! And I can still hear!)

Sam-NewZealand

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Re: 29 yrs old, just diagnosed with a large AN and am terrified
« Reply #3 on: December 12, 2012, 01:29:56 am »
hey there :) .... you sound like me a week ago.  I too am 29 with a 25mm tumour & have constant tinitus and hearing loss in my left ear.  Best advice is keep  breathing, take the days as they come and let the emotions be felt and acknowledged - then work on a plan with your specialist.  I've just been to see a surgeon 5 hours from home who has completed 300 or more operations & was a great positive person to deal with.

My tumour is pressing on my brain stem as well & in the MRI you can see how it has really caused affect visually, mine is also now pressing on my sensory nerve for my left side of my face. It is a scary time but i just have to keep looking forward xxx

I'm sure like me you will find this site great & i also enjoyed watching youtube clips from http://www.youtube.com/user/carolchristensen7/videos?view=0 .. nice and positive xxx

MRI on 16 Nov 2012 diagnosed - 29 years old!
Left AN 2.7 x 2.6 x 2.4 cm - pressing on brainstem & sensory nerve for face, full/numb ear feeling, constant tinnitus & major hearing loss in Left ear
7 hr AN surgery 25 Jan 2013
2 hr CSF Leak surgery 16 Feb
SSD Left, dry eye & slight Facial Nerve Damamge