Author Topic: Another Newbie Here - Any veterans with AN out there?  (Read 8021 times)

arizonajack

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Another Newbie Here - Any veterans with AN out there?
« on: June 05, 2012, 01:36:22 pm »
Joined ANA today.

Recently diagnosed after discovering almost total hearing loss in right ear last December.

Somebody in another forum suggested that having a good sense of humor is important so I've given my AN a name.

ALF (Alien Life Form) is very small. 3mm x 4 mm x 9 mm. So I am watching and waiting. Next MRI is October.

I also have moderate hearing loss in my left ear and have had a Phonak Audeo S Smart and Phonak CROS for several months. Just got the remote control device (My Pilot) today. Gives me access to several feature that I couldn't use before so we'll see how that works out.

I am a veteran (age 65) and my diagnosis, hearing aids, and future treatment are all done at my local VA Medical Center.

I'd be interested to see if other vets frequent these fora.

Does anybody ever answer yes to "Is AN a liver disorder"?

There's that sense of humor again.
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

MDemisay

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Re: Another Newbie Here - Any veterans with AN out there?
« Reply #1 on: June 06, 2012, 10:47:46 pm »
Welcome Arizonajack!

You have found a forum of experienced listeners and advisors although none of us has a medical degree! We are all empathetic listeners here with a common AN problem some people are watch and wait with little teeny AN's, some have had surgery with a total removal, some have had a near total removal (like myself) and are waiting to give it a lethal dose of radiation either GK or CK.

Although, I admire your sense of humor, there is nothing funny about them, because they grow at differing rates of speed. Like you, I have also named my neuroma. My AN's name used to be 'Irving' then in 2004 I had my large tumor debulked to 'Ir' . In October of 2011, on a routine CT scan with contrast, my Neurosurgeon said it was time to do Gamma Knife. This frustrated me greatly and caused me to be in a panic state (as it does many of us who come here for comfort and support).

I am at peace now, and I hope you find peace in research here and guidance if you want it. But, I caution you, do something with ALF for as you laugh, he grows and you may have little time or you may have a lot of time! Depending on what your last MRI said.

If your tumor is a large one, you maybe compromising your health if you don't act soon! You see I ignored my body signals, whereas, I could have done something much sooner. Truly, my outcome could have been much different than it is now! Not that I am complaining I have learned to adapt over time. Most of us learn to live with ourselves.

I use my naming my AN to make it as insignifigant as possible to master it and imagine that it is shrinking already. I encourage you to do the same.

Welcome to the forum! You have found an oasis of fellow ANers here. Sad that we had to meet this way but glad to have another point of view to add.

If you notice, on Monday, I will be going for GK and I will be starting my GK Treatment Journal soon. Good luck with ALFNmay you decide soon. Ready to hear from you again.

Mike

1974 - Dr. Michelson  Colombia Presbyterian removal of 3 Arterio Venous Malformations
2004- Dr. Sisti  NY Presbyterian subtotal removal of 3.1 cm AN,
2012 - June 11th Dr. Sisti Gamma Knife (easy-breasily done)"DEAD IRV" play taps!
Research, research, research then decide and trust in God's Hands!

jaylogs

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Re: Another Newbie Here - Any veterans with AN out there?
« Reply #2 on: June 07, 2012, 04:33:09 am »
Hello Jack!! Sorry you had to find this place, but you'll find this is a great source of information and a place to safely ask questions.  I am a vet, 47 now...was 45 when I got diagnosed with my AN.  I also live in Arizona...I believe I have seen quite a few military members come in and out of here, both active and not.  Since I am still working, I used private doctors at House Ear to get this bugger out.  Good luck with your journey and let us know how it goes!
Jay
8.1mm x 7.8mm x 8.2mm AN, Left Ear, Middle Fossa surgery performed on 12/9/09 at House by Drs. Brackmann/Schwartz. Some hearing left, but got BAHA 2/25/11 (Ponto Pro) To see how I did through my Middle Fossa surgery, click here: http://www.caringbridge.org/visit/jaylogston

Mickey

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Re: Another Newbie Here - Any veterans with AN out there?
« Reply #3 on: June 07, 2012, 07:06:00 am »
Hi ArizonaJack! I`m a veteran also... Diognosed about 5 years ago @58+ w/ approx. 1cm AN. I have been W+W since then and doing fine (stable). I would suggest to take your time and do your homework before making any decisions. Take a look at the W+W brigade posts here... Best wishes, Mickey

james e

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Re: Another Newbie Here - Any veterans with AN out there?
« Reply #4 on: June 07, 2012, 12:29:50 pm »
I lived in Tucson years ago and was in a U2 squadron at Davis Monthan, and  a F100 squadron at Luke AFB near Phoenix. I was in a F4 fighter squardon at Phu Kat and a F100 squadron at Phan Rang Viet Nam. I was also stationed in Thailand with the U2s. Probably lots of vets here. Welcome to the club...lots of support here.

James

arizonajack

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Re: Another Newbie Here - Any veterans with AN out there?
« Reply #5 on: June 07, 2012, 04:05:15 pm »
Thanks, everybody.

My next MRI is October. That'll give me an idea of the growth rate.

I'm certainly doing my research. Started that as soon as I got home the day I got the news. I have a nice big section of my computer devoted to AN.

I'll be hanging around.
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

nelsonrl

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Re: Another Newbie Here - Any veterans with AN out there?
« Reply #6 on: May 19, 2014, 03:41:50 pm »
I'm from Oregon.... Viet Nam vet.  Diagnosed with AN back in 1997.  Had surgery in 1998.. They had to sever my auditory and equilibrium nerves.  Totally deaf and unstable on my right side.  VA says its not service related.  Any one get a different answer from VA?

arizonajack

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Re: Another Newbie Here - Any veterans with AN out there?
« Reply #7 on: May 20, 2014, 01:56:30 pm »
I'm from Oregon.... Viet Nam vet.  Diagnosed with AN back in 1997.  Had surgery in 1998.. They had to sever my auditory and equilibrium nerves.  Totally deaf and unstable on my right side.  VA says its not service related.  Any one get a different answer from VA?

I've read enough about ANs in the last couple of years to agree that they are very likely not service related.

I'm sure that mine isn't. It developed 45 years after I was in the Army.

But I qualified for Group 7 VA medical benefits the year before I was diagnosed. Group 7 is for vets who have no service connected issues, have low income, and are willing to pay co-payments.

I had already been retired and on Social Security so I qualified for Group 7 based on low income. So that's how the VA ended up paying for my treatment.

Have you applied for general health care benefits lately?
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

Hokiegal

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Re: Another Newbie Here - Any veterans with AN out there?
« Reply #8 on: May 20, 2014, 06:12:53 pm »
Jack, recently diagnosed and already a hero member -- you don't mess around, do you!?  :) Something tells me you'll make out just fine.  And thank you for your service. 
3.0cm AN diagnosed 08/11, age 47
surgery 09/11, Dr. Patel (MUSC), 95% removed
SSD with tinnitus, right side facial paralysis, vision and balance issues
facial movement much improved, and still returning after 3yrs
"We are better than we think, and not quite what we want to be."  Nikki Giovanni

arizonajack

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Re: Another Newbie Here - Any veterans with AN out there?
« Reply #9 on: May 21, 2014, 10:44:22 pm »
Hasn't been all that recent.

I was diagnosed 4/10/12, joined ANA less than two months later, and had GK 14 months ago.

So I'm a veteran in more ways than one.

But others on this site have much more experience with ANs than I.



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

Hokiegal

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Re: Another Newbie Here - Any veterans with AN out there?
« Reply #10 on: May 22, 2014, 01:20:19 pm »
I should have paid closer attention to the date of your original post.  Actually, I read it, but my brain somehow processed it as December 2013.  Uuuggghhh!!!  :D   :D   :D
3.0cm AN diagnosed 08/11, age 47
surgery 09/11, Dr. Patel (MUSC), 95% removed
SSD with tinnitus, right side facial paralysis, vision and balance issues
facial movement much improved, and still returning after 3yrs
"We are better than we think, and not quite what we want to be."  Nikki Giovanni

arizonajack

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Re: Another Newbie Here - Any veterans with AN out there?
« Reply #11 on: May 22, 2014, 04:53:43 pm »
That's OK.

Seems like it was only yesterday.

 ::)
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

clarencewolverton

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Re: Another Newbie Here - Any veterans with AN out there?
« Reply #12 on: May 23, 2014, 08:53:04 am »
Hi i am a retire vet. discovered mine in dec about the same size. however i have hearing and will do another mri in jul. the va did issue me hearing aids. i understand some vs will give you soundbite whic is a great device forsingle sided hearing.