Author Topic: Age of AN patients: UPDATE with data and names thru post 126 p 9  (Read 36490 times)

Pembo

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Post your age and size of tumor at diagnosis. I apologize for any errors...blame it on my AN! :)
I started....Discovered at age 35, 4 cm.

thru post 126
16 6 krmilmont
17 6mm coloradokidd
17 4.8 Taylor
17 6 chelsmom/ChelseaR
18 4.5 robynabc

21 2 Clifton
21  5.3 Chrissmom/Chris
25  6 jerseygirl
26  1.2 jwh
27  2.2 CE
27 3.2 Juliette
28  8 mm Kristin
28  3.5 lori78
29 1.4 mindyandy

30 3 cheza
30 ? marie
31  3 Angieshubbie
32  1 zjane
32  2 webwrestler
33 9mm chica07
34 14mm Tuckerro
34 1 candtlaw
34 1 krbonner
35 4 Pembo
35 18mm danijake
35 3 amylynn
35 1 JillMarie
37 3 Gabbie
38 1.7 carmeng
38 3.5 jacobs
38 4 amymeri
38 4 Patti
38 1.5 Dealy
38 1.2 RICE522
39 3.4 lifeisgood
39 4 mm targa72e
39 7 mm lthompson

40 8mm lthompson
40 3 kippy6
40 3.5 matti
41 8 satman
41 1.0 jtd71465
41 2 Mary 117
41 2.7 Pable
42 1.8 GM
42 3.5 jeanlea
42 2 cookiesecond
43 1.5 Denisex2boys
43 3.5 Victoria1999
44 2 Cheryl
44 4 4 cm in Pacific Northwest
44 1.7 Dantheman
44 2 Mark
44 7mm ppearl214
44 1 jcinma
45 1.5 leapyrtwins
46 3.2 1wareagle
46 1.7 Dan
46 4 TP
48 1.1 Raven
48 1.3 Arushi
48 .8 Raven
48 1.9 Bejoi
48 1 Betsy
49 ? Ellenmn
49 1.5 Arushi
49 2 mm Susie
49 2.0 Peggy
49 ? niknyu
49 1.2 CherylR

50 2.2 marystro
50 1 MLB57
50 2.3 Martin
50 2.5 Obita
50 2 nancyann
51 2.1 kss4luck
51 2 johnsli
51 1.5 sloxana
51 4mm CherylR
51 2 cm Kenn
52 4 mm marg
52 3 cm jcinma
52 1.5 yoga52smh
52 4 mm vcschaub
52 2 TT
52 1 JLang
52 2 hhb
53 1.7 Lainie 181818
53 2 cm CherylR
54 3.5 Brendalu
54 4mm Bigbear
54 9 mm Evelia
55 7 deea
56 2.2 kat
56 9 mm RED in Palacios
56 2.5 Darcy
56 1.1 elliemae
56 2.5 Dealy
57 8mm mema
57 1.5 Dana
57 1.2 rezski
59 ? Catflower
59 1.2 wwalker
59 11 mm Jackie

60 2.6 nearl r. lyons
60 2 Sue
63 4.5 Jim Scott
62 4mm mhs
63 1.2 Lamsue23
63 1 okjesandy
64 1.5 aardvark
64 2 Boppie
67 1.7 Featofclay
« Last Edit: December 19, 2007, 12:54:00 pm by Pembo »
Surgery June 3, 2004, University Hospitals Cleveland, BAHA received in 2005, Facial Therapy at UPMC 2006

RED in Palacios

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Re: Age of AN patients
« Reply #1 on: May 23, 2007, 01:18:07 pm »
This could prove interesting.  Diagnosed at 56 years of age.  9mm X 3.6 mm.  Just for more info, total hearing loss on effected side.

Richard
Diagnosed 10-16-06.  3.6 mm by 9 mm.  Waiting and watching actively.

Sue

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Re: Age of AN patients
« Reply #2 on: May 23, 2007, 01:20:56 pm »
Diagnosed 12 days after my 60th birthday.  Medium sized 2cm AN.

Sue in Vancouver
Sue in Vancouver, USA
 2 cm Left side
Diagnosed 3/13/06 GK 4-18-06
Gamma Knife Center of Oregon
My Blog, where you can read my story.


http://suecollins-blog.blogspot.com/2010/02/hello.html


The only good tumor be a dead tumor. Which it's becoming. Necrosis!
Poet Lorry-ate of Goode

mhs

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Re: Age of AN patients
« Reply #3 on: May 23, 2007, 01:46:32 pm »
Diagnosed 2 months ago at age 62 with 4mm AN (currently waiting and watching as per Dr. Rick Friedman at House); no symptoms from tumor discovered by accident from MRI to diagnose 7 months of lightheadedness and debilitating leg "weakness" after sudden collapse.

mhs in south carolina
4mm x 5mm left-sided AN diagnosed 4/07; currently watch and waiting as per Dr. Friedman at HEI

Patti

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Re: Age of AN patients
« Reply #4 on: May 23, 2007, 02:05:39 pm »
38 years old-4cm.
4 cm AN removed 12/2000
subsequent brain swelling
removal of part of cerebellum
face, scalp,tongue numbness and partial paralysis
no corneal sensation and no tears-frequent eye issues
cognitive issues
Regrowth (3.1 x ..86 cm) treated by SRS on November 6, 2015

er

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Re: Age of AN patients
« Reply #5 on: May 23, 2007, 02:12:49 pm »
@ the time Age 54 9mm left side
eve

Boppie

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Re: Age of AN patients
« Reply #6 on: May 23, 2007, 02:53:20 pm »
Diagnosed at age 64 - 2cm

Mark

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Re: Age of AN patients
« Reply #7 on: May 23, 2007, 02:58:06 pm »
Actually, there have been studies done on AN ages although I can't think where I've seen them right at the moment. As I recall, most AN's are discovered in the 5th, 6th and 7th decade (40's, 50's , 60's). Given that the majority are over 1 cm at the time of diagnosis and the average growth is 2 mm / year, one could say they typically start in the 30's and 40's. I would be willing to bet that an informal poll here would show a graph that is low up to 30 then begin to rise with the top being between 40-60 and then decreasing. It'll be interesting to see.

I'll throw my stats in age 44 size 2 cm

Mark
CK for a 2 cm AN with Dr. Chang/ Dr. Gibbs at Stanford
November 2001

ppearl214

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Re: Age of AN patients
« Reply #8 on: May 23, 2007, 03:04:36 pm »
I refuse to be any older than... *coff*... 25 :D


(diagnosed at age.... oy.... 44, at time of diagnosis, 7mmx4mm)
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

nancyann

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Re: Age of AN patients
« Reply #9 on: May 23, 2007, 03:18:16 pm »
Diagnosed age 50 - 2CM
2.2cm length x 1.7cm width x 1.3cm  depth
retrosigmoid 6/19/06
Gold weight 7/19/06, removed 3/07
lateral tarsel strip X3
T3 procedure 11/20/07
1.6 Gm platinum weight 7/10/08
lateral canthal sling 11/14/08
Jones tube insert right inner eye 2/27/09
2.4 Gm. Platinum chain 2017
right facial paralysis

Mark

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Re: Age of AN patients
« Reply #10 on: May 23, 2007, 03:25:42 pm »
Here's a couple of tidbits from a google search on age and AN's

from a noise study:

Of the 146 people with acoustic neuroma in this study, nearly two out of three were 50 or older.

from a NYU study

Age: 30-60 (Average age of diagnosis is 50)

From the Harvard Medical School:

These tumors have been linked to a mutation in a protein that regulates tumor suppression. In most cases the tumor grows only on one side of the head and is diagnosed between the ages of 30 and 50. Acoustic neuromas in children are very rare. People with a hereditary disease called neurofibromatosis type 2 develop bilateral acoustic neuromas because they lack the tumor suppressor protein merlin. About 10% of all acoustic neuromas occur in people with neurofibromatosis.

and here's a bonus from the same study for the wait and watchers who wonder how many stop growing after discovery:

At least 10% of acoustic neuromas do not show signs of growth after they are found. Since the tumor is very slow-growing and benign, having a follow-up MRI scan and an audiogram in 6 and 12 months is a safe alternative to immediate intervention. If no changes are found, yearly checkups afterward are adequate to monitor the tumor. If the tumor does not show signs of growth, intervention is not necessary. The risk of this approach is that permanent hearing loss can occur during this observation period.

If the tumor shows signs of growth or is pressing on the brainstem, radiation or surgery are necessary. The choice between the two depends upon a lot of factors best discussed with your surgeon and radiation oncologist. Factors such as size and location of the tumor, related health issues, age, and hearing loss all need to be considered.


Here's an excellent article from the congress of Neurosurgeons. I'll paste the age part, but attach the link as it might be useful for those considering the surgery results aspect

http://book2.neurosurgeon.org/?defaultarticle=&defaultnode=2693&layout=22&pagefunction=Load%20Layout&formfields[skip]=1

The case-mix of each hospital group was explored for differences in patient sex, race, and age at surgery. As expected for an acoustic neuroma patient sample, there were nearly equal numbers of men and women (48 and 52%, respectively) in the total sample and across hospital groups. The sample was 86% white. Group 1 had significantly fewer white patients (79%) relative to Groups 2, 3, and 4 (÷2; P < 0.01). The mean age at surgery was 50.6 years for the entire sample, typical of acoustic neuroma patients. The mean age at surgery differed across the hospital groups, with Group 4, on average, conducting procedures on somewhat younger patients (47.7 years; univariate analysis of variance; P < 0.01). Overall, just 5% of the entire sample was older than 75 years. Groups 1, 2, and 3 tended to operate on more patients older than 75 years than Group 4 (P < 0.01; ÷2).

Nearly 70% of the sample presented without a comorbid condition, typical of the otherwise healthy acoustic neuroma patient. The most frequently reported comorbidity was “unspecified hypertension� (13% of entire sample), followed by “other nervous system disorders� (7% of the entire sample). All other comorbidities examined ranged from 0.8 to 3% of the entire sample. Some patients reported with multiple comorbidities. Forty percent of the patients in Groups 1 and 2 reported at least one comorbidity, whereas in Groups 3 and 4, 25% of the patients reported comorbidities.


Here's one that includes NF2 having a much younger onset from caremark Health resources:

A person with NF2 will develop an acoustic neuroma if the remaining unchanged NF2 gene becomes spontaneously changed or missing in one of the myelin sheath cells of their vestibular nerve. People with NF2 often develop acoustic neuromas at a younger age. The mean age of onset of acoustic neuroma in NF2 is 31 years of age versus 50 years of age for sporadic acoustic neuromas. Not all people with NF2, however, develop acoustic neuromas. People with NF2 are at increased risk for developing cataracts and tumors in other nerve cells.


Most people with a unilateral acoustic neuroma are not affected with NF2. Some people with NF2, however, only develop a tumor in one of the vestibulocochlear nerves. Others may initially be diagnosed with a unilateral tumor but may develop a tumor in the other nerve a number of years later. NF2 should be considered in someone under the age of 40 who has a unilateral acoustic neuroma. Someone with a unilateral acoustic neuroma and other family members diagnosed with NF2 probably is affected with NF2. Someone with a unilateral acoustic neuroma and other symptoms of NF2 such as cataracts and other tumors may also be affected with NF2. On the other hand, someone over the age of 50 with a unilateral acoustic neuroma, no other tumors and no family history of NF2 is very unlikely to be affected with NF2.


and for those who were interested in the affect of age on surgery outcomes here is a study from Dr. Jackler et all at UCSF:


The effect of age on acoustic neuroma surgery outcomes.

Oghalai JS, Buxbaum JL, Pitts LH, Jackler RK.

Department of Otolaryngology- Head and Neck Surgery, University of California San Francisco, California 94143-0342, USA. oghalai@itsa.ucsf.edu

OBJECTIVES: To ascertain the effect of age on hearing preservation, facial nerve outcome, and complication rates after acoustic neuroma surgery. STUDY DESIGN: Retrospective chart review. Two study arms were used: a comparison of the authors' oldest patients with their youngest patients (extremes of age arm) and an analysis of all middle fossa surgical procedures (middle fossa arm). SETTING: Tertiary referral center PATIENTS: Total of 329 patients. For the extremes of age arm, 205 patients were studied in two cohorts with 150 older patients (>60 years) compared with 55 younger patients (<40 years). The approaches included 21 middle fossa (MF), 38 retrosigmoid (RS), and 91 translabyrinthine (TL) procedures in the older group versus 25 MF, 17 RS, and 13 TL in the younger. For the middle fossa arm, there were 170 patients (age range 15-76 years) who underwent the MF approach for an attempt at hearing preservation. MAIN OUTCOME MEASURES: Hearing preservation was defined as the maintenance of either class A or class B hearing (AAO-HNS class). Good facial nerve outcome was considered the maintenance of either grade 1 or 2 (House-Brackmann scale). Cerebrospinal fluid leak rates and other postoperative complications were also tabulated. RESULTS: After adjustment for tumor size and surgical approach using multiple logistic regression analysis, the extremes of age study arm demonstrated that there is a lower chance of preserving good hearing in older patients (p = 0.048, odds ratio = 0.30). Age was not associated with a difference in the rate of good facial nerve outcome (p = 0.2). There was a trend toward slightly higher rates of cerebrospinal fluid leak in the older patient group (p = 0.07) but no difference in the rate of other complications (p = 0.9). The middle fossa study arm, after adjustment for tumor size and surgical approach, demonstrated that older patient age is associated with a lower rate of preservation of good hearing (p = 0.01, O.R.=1.044). There was no association between age and good facial outcome (p = 0.7). CONCLUSIONS: Older patient age lowers the chance of hearing preservation but does not affect facial outcomes. There is a trend toward a higher rate of cerebrospinal fluid leak in older patients, but no increased risk of other complications.



and finally for those who want to know how "special" we all are, here's a Medtv analysis:

Unilateral acoustic neuroma affects only one ear. Unilateral acoustic neuroma accounts for approximately 8% of all tumors inside the skull. One out of every 100,000 individuals per year develops an acoustic neuroma. Symptoms may develop at any age, but usually appear between the ages of 30 and 60. Unilateral acoustic neuroma is not a hereditary condition.


Isn't google wonderful, enjoy   ;D

Mark





CK for a 2 cm AN with Dr. Chang/ Dr. Gibbs at Stanford
November 2001

krbonner

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Re: Age of AN patients
« Reply #11 on: May 23, 2007, 03:52:31 pm »
I was diagnosed with a 1.8cm AN at 34.  Although there is no research available to support my theory, I believe my two pregnancies and two years of breastfeeding in the few years prior to diagnosis accelerated my symptoms, and therefore my diagnosis (not that the hormones contributed to the original tumor development, but that they contributed to a faster-than-average growth that made me symptomatic earlier than many). 

Katie
diagnosed June 2005
2.3cmx1.6cmx1.4cm left AN
translab Sept 13, 2006; Drs. McKenna and Barker in MA (MEEI/MGH)

Betsy

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Re: Age of AN patients
« Reply #12 on: May 23, 2007, 04:09:44 pm »
Age 48 at diagnosis, about 1cm.

Good info, Mark!
15mm left side AN, diagnosed 4/25/07, radiosurgery via Trilogy 8/22/07.  Necrosis & shrinkage to 12.8mm April 2009

vcschaub

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Re: Age of AN patients
« Reply #13 on: May 23, 2007, 04:23:58 pm »
Age 52, 4 mm. Grew 2 mm in 18 months. Had middle fossa at 54. Good hearing outcome.
6mm
Middle Fossa November 8, 2005
Drs Brackmann and Hitselberger
House Ear

jcinma

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Re: Age of AN patients
« Reply #14 on: May 23, 2007, 06:14:56 pm »
Age 44 1cm.
Age 52 3cm. reoccurrence

Like Katie I believe hormones (ingested tons for fibroid issues) contributed to the rapid growth rate of the reoccurrence
Jane
1cm AN removed (lost hearing) 11/96
3cm reccurrence debulked to preserve facial function 2/05
FSR 4/05
Mass General Hosp. Boston MA