Author Topic: Feeling better about this since seeing new doctor  (Read 3837 times)

chloes mema

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Feeling better about this since seeing new doctor
« on: January 25, 2012, 06:29:19 pm »
Saw a new doctor today who was very informative.  She explained that the AN is totally encapsulated in the ear canal, not in the brain or currently near the brain.  She has ordered a thin cut MRI with contrast for the first of May.  She said if there is a change = > 2mm then I will have to do something about the tumor.  She was very positive about radiosurgery but did also discuss surgery.  I now feel like I finally understand this "thing" and what my options are.   :)

Karen
 
Diagnosed October 2011
Oct '11-9 X 6 mm left ear
Mar '12 - 1.25cm
Tinnitus, imbalance, and mild dizziness (ditsy)
My AN = Annoying Nuisance
Jan'12 W&W
May'12 CK completed
Oct'12 hemifacial spasms
Dec'19 It's back

Rivergirl

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Re: Feeling better about this since seeing new doctor
« Reply #1 on: January 25, 2012, 08:25:38 pm »
Great you have a Dr. that you can really talk to and she gave you much needed information and support.
Diagnosed 6/2008
Right AN 2cmx8x9
Sub-Occipital at Mass General with Martusa and McKenna on 5/31/11
Right SSD, very little taste
I think I will make it!

Jim Scott

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Re: Feeling better about this since seeing new doctor
« Reply #2 on: January 26, 2012, 12:06:00 pm »
Karen ~

Thanks for the update.  Having a doctor that you feel confident and comfortable with is a crucial part of dealing with an acoustic neuroma diagnosis and planning how to treat it (if at all).  I'm pleased to learn that you're now in a better place with your AN situation.

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.

chloes mema

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Re: Feeling better about this since seeing new doctor
« Reply #3 on: January 26, 2012, 12:25:59 pm »
Me too, Jim. 
After talking to my family they all said this doctor is so much better, none of them really cared for the first doctor he was too casual about the whole thing.
Rivergirl, yes I was very impressed with how she handled my appointment and more so how she plans to handle me and my AN.  Thanks to all the posts I've read over my couple of months here encouraging people to seek more opinions and to trust your gut as I think someone posted.  My gut says this is a good thing!   ;)

Karen
Diagnosed October 2011
Oct '11-9 X 6 mm left ear
Mar '12 - 1.25cm
Tinnitus, imbalance, and mild dizziness (ditsy)
My AN = Annoying Nuisance
Jan'12 W&W
May'12 CK completed
Oct'12 hemifacial spasms
Dec'19 It's back

james e

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Re: Feeling better about this since seeing new doctor
« Reply #4 on: February 07, 2012, 03:50:48 pm »
There are lots of great doctors out there. Glad you found one.

James

jockieau

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Re: Feeling better about this since seeing new doctor
« Reply #5 on: February 07, 2012, 04:19:31 pm »
Hi Karen

I have a similar AN in that it is confined to the IAC (well it was last MRI!) - and my surgeon has also said he will recommend action if there is growth - did you doctor give you a reason for saying action after +2mm growth?  I'd be interested to know what reasons they gave you.  I guess with mine it is that growth means activity means more problems and more likely to continue growing - and am interested to know if there is another take on this.

Jockieau

chloes mema

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Re: Feeling better about this since seeing new doctor
« Reply #6 on: February 08, 2012, 08:50:33 am »
Hi Jockieau - doctor was explaining that ANs have a growth pattern of growing about 2mm a year & then they level off.  Don't remember the exact time span but for some reason 10 years sticks in my brain.  She said about 70% of the tumors after they level off don't change & I'm assuming because of my age (soon 2 b 66) that she figures mine may have leveled off.  She also said she needed to see if it's an aggressive grower (+ 2mm in 6 mths) or if it's leveling off.  My "discovery" MRI was in Oct 2011 so there is no idea of how long I've had this critter.   :D :D
Also, if it's not changing or not changing much & I don't develop symptoms that really bother me she will leave me on W&W.
I think you're correct in the "...growth means more problems and more likely to continue growing".  Also, my doctor kept asking me how my hearing was.  She didn't care about the hearing tests results just wanted to know how I felt about my hearing capabilities in my AN ear so I guess depending on how I handle my symptoms will also play into this.
Hope this is of some help to you.  I'm still VERY new to all this.

Karen
Diagnosed October 2011
Oct '11-9 X 6 mm left ear
Mar '12 - 1.25cm
Tinnitus, imbalance, and mild dizziness (ditsy)
My AN = Annoying Nuisance
Jan'12 W&W
May'12 CK completed
Oct'12 hemifacial spasms
Dec'19 It's back