Author Topic: 911 First Responders Diagnosed with Acoustic Neuroma?  (Read 8610 times)

hiwy2u

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911 First Responders Diagnosed with Acoustic Neuroma?
« on: August 21, 2014, 05:47:12 pm »
Hi all. My husband, a 911 first responder was diagnosed with AN in 2012. Trying to find out how many other first responders have been diagnosed with same and propose addition to WTC Related Heath conditions. Anybody??

ANGuy

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Re: 911 First Responders Diagnosed with Acoustic Neuroma?
« Reply #1 on: August 28, 2014, 09:18:31 pm »
I spent 24 hours digging at the WTC sight on or about 09-15-01.  I have had the typical AN symptoms for 8 years, but was not diagnosed until a few months ago when the symptoms became more noticeable.  So, my 1cm tumor probably started growing about 10 years or so ago.  It does make me wonder, and it was one of the fist things I thought of.  But, I'm not sure how whatever we may have been exposed to could cause an AN.  Unless witnessing the scene itself could cause an AN.  I've seen a lot of things in my life, but nothing like what I saw there.  I still smell the smells and get a certain taste in the back of my throat from that unique combination of burnt flesh, crushed concrete, and decomposing bodies.  I know those smells and tastes aren't really there, but sometimes something triggers the sensation of them.
Diagnosed June 2014 1cm AN at 47 years of age.  Had fluctuating symptoms since 2006.    6 mos MRI (Dec 2014) showed no growth, MRI  in July 2015 showed no growth.  MRI Jan 2016 showed no growth.  MRI Aug 2016 showed no growth.  I'm gonna ride the WW train as long as I can.

arizonajack

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Re: 911 First Responders Diagnosed with Acoustic Neuroma?
« Reply #2 on: August 31, 2014, 11:26:55 am »
Hi all. My husband, a 911 first responder was diagnosed with AN in 2012. Trying to find out how many other first responders have been diagnosed with same and propose addition to WTC Related Heath conditions. Anybody??

My gut says that, after 11 years, the AN is likely unrelated to 9/11.

But you have failed to provide any important information like his age, the symptoms, when those symptoms started, the dimensions of the tumor, and what his doctors have told him.

However, in all fairness, I figured that if any ANs were related to 9/11 there would be some documentation online.

I found only one person who was diagnosed with an AN but it was 8 years after 9/11. There are several articles on this guy but this article says:

"a tumor doctors say he likely developed as a result of exposure to carcinogens when he responded as a volunteer firefighter to the World Trade Center Sept. 11, 2001."

That is so vague and unsupported that's it's easily dismissed.

Here's the article:

http://www.timesledger.com/stories/2014/20/hearingcenter_bt_2014_05_16_q.html

Reads more like an advertisement for the hearing aids than anything else.
3/15/18 12mm x 6mm x5mm
9/21/16 12mm x 7mm x 5mm
3/23/15 12mm x 5.5mm x 4mm
3/13/14 12mm x 6mm x 4mm
8/1/13 14mm x 5mm x 4mm (Expected)
1/22/13 12mm x 3mm (Gamma Knife)
10/10/12 11mm x 4mm x 5mm
4/4/12 9mm x 4mm x 3mm (Diagnosis)

My story at: http://www.anausa.org/smf/index.php?topic=18287.0

hiwy2u

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Re: 911 First Responders Diagnosed with Acoustic Neuroma?
« Reply #3 on: September 14, 2014, 11:00:45 am »
Husband's Neuro-Oncologist confirmed AN as being related to exposure to toxins at WTC site (benzene, radiation, mold and textile dust to name a few). If you were a  First Responder with documented proof, you can assist in getting AN added to list of WTC Health Program qualified illnesses. If you are indeed authentic WTC First Responders, then that would be 4 diagnosed out of 60,000
 registered First Responders. Typically AN is 1 out of 100,000.(growth rate of 1.5 mm per year growth rate fits into time frame as well).

Note:  I edited out your personal information per forum netiquette.  Users may contact you through the private messaging system.  Clarice
« Last Edit: September 16, 2014, 02:11:37 pm by CHD63 »

SgtPanarella

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Re: 911 First Responders Diagnosed with Acoustic Neuroma?
« Reply #4 on: January 20, 2017, 06:48:45 pm »
Hello, I know this is a little late, but I am just getting around to this now. I was a construction worker at Ground Zero a s the Staten Island Landfill from 9/2001 - 7/2002. In 2010 I was diagnosed with an 8mm acoustic neuroma. I was 33 at the time. With little research I believe I am the 5th 9/11 responder out of 60,000 to be diagnosed with this. It says that this affects 1 in 100,000. Seems a little odd.....

Mike1779

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Re: 911 First Responders Diagnosed with Acoustic Neuroma?
« Reply #5 on: January 29, 2017, 07:47:09 pm »
I also was first responder at WTC 9/11 and had worked there for two weeks.  I was also diagnosed with an acoustic neuroma and was trying to find out if any other first responders had the same issue. Does anybody know how many people from 9/11 have been diagnosed with the same?   

ANSydney

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Re: 911 First Responders Diagnosed with Acoustic Neuroma?
« Reply #6 on: January 29, 2017, 10:01:41 pm »
WOW, this may prove to be useful towards discovering a cause of acoustic neuromas!

G_Man

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Re: 911 First Responders Diagnosed with Acoustic Neuroma?
« Reply #7 on: September 25, 2019, 06:45:00 pm »
Ok, so now I'm on to something.  I worked down there in a building adjacent to ground zero.  We returned down there in February 2002.  I had an MRI in 2000 which didn't show a tumor but I had hearing loss.  My next MRI in 2009 showed the 6mm tumor.  I'm sure we have all seen the Petition 005 that was filed back in 2014 where the result was not enough evidence to put AN on the list.  So now we are up to 6 or 7 people.  So what do we do about it?
Diag: 08/11/2009 Left side
AN: 0.6cm.  65% Hearing loss, tinnitus, fullness, minor motion issues.
hearing loss over 25+ years.  MRI in 2000 showed nothing.
Optical Atrophy from infantcy
Watch and Wait.
As of 2017 I am on a 2 year MRI frequency.

Enri

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Re: 911 First Responders Diagnosed with Acoustic Neuroma?
« Reply #8 on: September 25, 2019, 09:07:22 pm »
To all of you that are first responders, thank you. 
----
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

G_Man

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Re: 911 First Responders Diagnosed with Acoustic Neuroma?
« Reply #9 on: September 28, 2019, 01:43:52 pm »
Hey folks.  I know this thread is a little old and some of the people here may have moved on.  If you are interested in being in a group of people who think their AN may have been caused as a result of 9/11 please either respond here again in this thread or PM me.  I'm considering filing but it would be more helpful to everyone if a group of people submitted a new request to have Acoustic Neuroma added to the list.
Thanks.
Diag: 08/11/2009 Left side
AN: 0.6cm.  65% Hearing loss, tinnitus, fullness, minor motion issues.
hearing loss over 25+ years.  MRI in 2000 showed nothing.
Optical Atrophy from infantcy
Watch and Wait.
As of 2017 I am on a 2 year MRI frequency.

9/11 Responder

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Re: 911 First Responders Diagnosed with Acoustic Neuroma?
« Reply #10 on: April 08, 2022, 02:51:21 pm »
I know I'm really late to the game, but I too may have an acoustic neuroma. I just saw an audiologist, and an ENT. I have significant hearing loss in my left ear compared to my right, I've been having vertigo on and off for years, and I have a constant ringing in my ears. The ENT is sending me to have a MRI with contrast to see if in fact it is an acoustic neuroma.

I was at the WTC site on 9/11. At 5:20pm I was at Chambers and Greenwich and had to run when WTC tower 7 fell. I stayed on site helping out for the first week. I am now 61 years old, female.
I tend to 'ignore' medical issues and hope they go away. Years ago I was told I needed hearing aids, but never got them due to the expense. The sudden hearing loss in my left ear started 2 1/2 months ago and progressed suddenly, but I tried to ignore it, like I tend to do.

I would like to hear from other 9/11 responders who have a acoustic neuroma. If I'm the 6th, 7th or 8th 9/11 responder that has an acoustic neuroma, then it should be covered since this is not a very common condition.

SgtPanarella

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Re: 911 First Responders Diagnosed with Acoustic Neuroma?
« Reply #11 on: August 20, 2022, 03:05:21 am »
Have we gotten anywhere with this yet?  Do we have a petition?  Can we get some doctors to support???

G_Man

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Re: 911 First Responders Diagnosed with Acoustic Neuroma?
« Reply #12 on: February 02, 2023, 05:10:02 pm »
I'm just revisiting this too.  When I spoke to a lawyer several years ago he said, "If you can find 10 or 12 people who also think 9/11 was a factor in having an acoustic neuroma bring them to me.  I'm still looking for yall'.
Diag: 08/11/2009 Left side
AN: 0.6cm.  65% Hearing loss, tinnitus, fullness, minor motion issues.
hearing loss over 25+ years.  MRI in 2000 showed nothing.
Optical Atrophy from infantcy
Watch and Wait.
As of 2017 I am on a 2 year MRI frequency.

 


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