Author Topic: large tumors  (Read 2479 times)

cherrypiper

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large tumors
« on: November 09, 2008, 06:19:43 pm »
i was at a local Houston area ANA meeting last weekend. We had an Eye surgeon talking about affects on the eye, which i have . She made the comment i'd like to hear from you folks on;

It is quite unusual for these neuromas to be above 20 mm (25 is an inch ).

I just read the thread about the 3.8 cm tumor and wondered what you folks had? how many were over 20 mm in size when removed.

Thanks
10 mm x 2.4mm surgery date 12/03/07

glad to be here

wendysig

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Re: large tumors
« Reply #1 on: November 09, 2008, 07:00:51 pm »
Hi Cherrypiper,

I haven't seen you post in a while and I hope that means you are doing well and living your life.   ;D

My AN was 2 cm or 20 mm when it was removed as were many others in this forum -- many, in fact, were larger.  I think the eye surgeon who spoke at your meeting is not very well informed with regard to ANs.

Best wishes
Wendy
1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!

Sue

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Re: large tumors
« Reply #2 on: November 09, 2008, 07:50:52 pm »
I think I gotta agree with Wendy on this one.  My AN was at 2 cm, but I've seen quite a few people on here with that size and bigger. 

Sue in Vancouver USA
Sue in Vancouver, USA
 2 cm Left side
Diagnosed 3/13/06 GK 4-18-06
Gamma Knife Center of Oregon
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The only good tumor be a dead tumor. Which it's becoming. Necrosis!
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Kaybo

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Re: large tumors
« Reply #3 on: November 09, 2008, 07:54:02 pm »
I don't know the official size of mine - I guess they didn't share that so readily back in the dark ages - but he told my family it was the size of a "man's fist".  I'd say that is pretty big!!

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
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SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
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texsooner

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Re: large tumors
« Reply #4 on: November 09, 2008, 08:13:32 pm »
Cherrypiper, my AN was 3.5(or 35mm) when successfully removed by surgery in August. I'm also in the Houston area...I couldn't attend the AN meeting, but my wife went and said it was very informative. Aside from being SSD(with tinnitus), the only issue I have is with a dry eye(that's why I was very interested in hearing the eye doctor's view about AN's). I couldn't tell you what % of diagnosed AN's are greater than 2 cm, but there are quite a few on this forum that have or have had AN's that size.

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.

ppearl214

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Re: large tumors
« Reply #5 on: November 09, 2008, 08:27:44 pm »
if my old memory serves me right.... CrazyKat (RockerDude Paul) had an AN approx 5cm (removed at MGH)... I believe Satman is the largest I've heard, approx 8cm.

Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

leapyrtwins

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Re: large tumors
« Reply #6 on: November 09, 2008, 08:30:14 pm »
My AN was 1.5 cm @ diagnosis and it had almost doubled at the time of my surgery - about six weeks later.

I think Phyl is correct.  Satman's is the largest that I'm aware of on this forum and it was 8 cm.

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

Bobbibl

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Re: large tumors
« Reply #7 on: November 09, 2008, 08:30:59 pm »
I had a 4cm removed about a month and a half ago.
4cm AN removed 9/23/08 at Columbia-Presbryterian in NYC by Dr. Michael Sisti with Retrosig approach.  No facial/muscle/balance issues just SSD on left side.

MAlegant

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Re: large tumors
« Reply #8 on: November 09, 2008, 08:31:08 pm »
Mine was 4cm.
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.

chocolatetruffle

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Re: large tumors
« Reply #9 on: November 09, 2008, 10:51:50 pm »
i had 2.8cm and that "free-loader" was removed with 3 months of my diagnosis  ;)
chocolatetruffle


2.8 cm left AN
Translab @ House/St Vincent's 11/27/07
Drs. Brackmann, Schwartz, Wilkinson, Stefan

jazzfunkanne

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Re: large tumors
« Reply #10 on: November 10, 2008, 03:11:03 am »
mine was over 4.5cm, i know another lady from the uk whos AN was 6cm, there is also a girl on here whos AN was over 5cm, the only effect i had was facial numbness.
over 4.5cm AN removed dec 06

cheza

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Re: large tumors
« Reply #11 on: November 10, 2008, 08:57:16 am »


Mine was 3cm x 2.9 cm when I looked at the scan photo it stood out like a sore thumb, my doctor didn't have to point it out.
diagnosed 4th Oct 07 with a 3cm left acoustic neuroma,
surgery 9th Nov 07, age 30 at time of surgery,
total hearing loss to left ear, grade 6 facial palsay (getting better)
latest MRI shows regrowth on facial nerve.

Jim Scott

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Re: large tumors
« Reply #12 on: November 10, 2008, 10:30:52 am »
Cherrypiper:

I have to conclude that a doctor stating that ANs are not usually larger than 25 millimeters is somewhat misinformed.  My AN was 4.5 cm (45 ml) and pressing on my brainstem. 

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.

satman

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Re: large tumors
« Reply #13 on: November 11, 2008, 09:55:06 am »
i am not very good at math,but mine measured out to be 8cm and it did affect my eye both pre and post.
keep in mind that i waited for about 1 year before i even went to a dr,might be why mine grew to the extreme.
kicked my little 8cm buddy to the curb-c ya !