Author Topic: Time to say hello  (Read 3225 times)

onceagain

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Time to say hello
« on: May 21, 2008, 02:44:26 pm »
I have been lurking here(6hrs 50 mins) for a while so I thought that it was time to say hello.  Hello!
I was originaly diagnosed with an AN in 1996.  I had failed a hearing test and a MRI showed a small AN(turned out to be 1.5cm) on my left side.  My PCP and the only surgeon that I saw said it was no big deal and that I should have it removed immediately to preserve what hearing I had left.  I agreed and had it removed by middle fossa by a Dr Charles Poletti at Hartford Hospital.  I lost all hearing in my left ear and had some minor balance issues but other wise all went well.
This past Feb. I experienced several symptoms that I reported to my PCP at my annual physical at the end of Feb.  I was thinking they were pre stroke symptoms.  I saw a neurologist who ordered an MRI which showed that my AN had returned(3.6cm)  All the Drs that I have seen have said that the symptoms that I reported were not related to the AN.
I started to do a little more research than I had done the first time an came across the AN site and this forum.  The information that I received from the site and everything that I read on the forum were a great help to me.  I am scheduled for translab on June 4 and a follow up SRS as soon as possible after my recovery from surgery.  I am very comfortable with the team of surgeons that I am seeing(Drs Oh, Mason, and Yunnis at Baystate Medical Center in Springfield,MA) and for the most part I am eager to get it over with.
Although I am not one who shares much(despite being married to a social worker for 38 years) I do appreciate all that I have read from those of you who do share.  Surprisingly for me I have found that it is a comfort to know that there are other people out there who are going or have gone through what I am going through.
Thanks for being here.
1.5cm left side AN removed Middle Fossa 1996
SSD
return of AN 3.6cm 2008

lori67

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Re: Time to say hello
« Reply #1 on: May 21, 2008, 02:59:20 pm »
Hi onceagain and welcome.

I'm glad your lurking has turned into posting.  Hopefully, having people to talk to this time will make it easier.  I know it's helped me to talk to people who truly understand first hand.

I hope that this surgery is a little easier - since you've already lost your hearing, that will be one less hurdle to go over.   And it really helps to have such confidence in your surgeons and to feel comfortable with them.

There's a link on here somewhere (someone help with this.. I can't remember it) to put your surgery date on our calendar.  We like to keep track of our AN family so we can make sure they are okay.  Plus most of us have horrible memories if we don't write things down!  :D

Good luck to you and keep us posted!
Lori
Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

Kaybo

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Re: Time to say hello
« Reply #2 on: May 21, 2008, 06:58:02 pm »
Hello!
Glad that you posted...know that we are here for you!

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
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

jcinma

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Re: Time to say hello
« Reply #3 on: May 21, 2008, 07:40:03 pm »
Hi Onceagain!

That should be mine name too!  I was diagnosed with a 1cm in 1996. Had retrosigmoid, lost hearing, struggled with headaches for a while but otherwise did ok. In 2005 had an MRI that showed a 3.2 regrowth. Had retrosigmoid again to debulk and followed up with FSR. I wish you lots of good luck, the very best possible outcome and a speedy recovery!! I am from the Springfield, MA area.

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

onceagain

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Re: Time to say hello
« Reply #4 on: May 23, 2008, 05:53:56 am »
Thanks K,Lori, and Jane for your response.  I met my surgeon for last time before surgery yesterday.  Now L just wait for June 4
1.5cm left side AN removed Middle Fossa 1996
SSD
return of AN 3.6cm 2008

GM

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Re: Time to say hello
« Reply #5 on: May 23, 2008, 06:28:49 am »
It's not lurking...it's learning...and maybe a bit of shyness  ;)

Welcome to our cyber family.

GM
Originally 1.8cm (left ear)...Swelled to 2.1 cm...and holding after GK treatment (Nov 2003)
Gamma Knife University of Virginia  http://www.medicine.virginia.edu/clinical/departments/neurosurgery/gammaknife/home-page
Note: Riverside Hospital in Newport News Virginia now has GK!!

jerseygirl

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Re: Time to say hello
« Reply #6 on: May 23, 2008, 08:57:11 am »
Hi, Onceagain,

I love your name! I should have been called that as well! I also had a regrowth and opted for another surgery last year. It was much easier, no comparison. I hope you will have the same experience and your recovery will be smooth, fast and easy! I don't know if itis just me but we seem to have quite a few recurrences lately. At least I don't feel so singled out!


                    Eve
Right side AN (6x3x3 cm) removed in 1988 by Drs. Benjamin & Cohen at NYU (16 hrs); nerves involved III - XII.
Regrowth at the brainstem 2.5 cm removed by Dr.Shahinian in 4 hrs at SBI (hopefully, this time forever); nerves involved IV - X with VIII missing. No facial or swallowing issues.

sgerrard

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Re: Time to say hello
« Reply #7 on: May 23, 2008, 09:04:53 am »
I had trouble keeping track of that calendar link, so now it is in my signature below, and follows me around wherever I go, like a little puppy. If you need help putting your surgery  date on it, just ask. Basically you keep clicking things until it lets you type. :)

The combination of surgery with radiation afterwards is becoming popular, especially for ANs over 3 cm. Its the best of both worlds, so to speak. You'll do fine.

Welcome to the forum, and best wishes for your surgery.

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

Jim Scott

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Re: Time to say hello
« Reply #8 on: May 23, 2008, 10:57:50 am »
Hi, Onceagain:

I had previously posted a response to you but it seems to have either disappeared or, more likely, I neglected to hit the 'post' button and it was never sent.  No matter.  I just wanted to welcome you to the site and the forums and offer my regret concerning your AN regrowth after all this time. 

When I first saw your post (Wednesday) I took the liberty of adding your surgery date to our calendar: http://my.calendars.net/AN_Treatments 

I hope and will pray that your Translab surgery goes well on June 4th. :)

Note to Steve: I bookmarked the Calendar page. 

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.

onceagain

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Re: Time to say hello
« Reply #9 on: May 23, 2008, 12:37:10 pm »
Jim, I went to the calender page to add my date and saw that it had been done.  Thanks
To everyone who has responded: I had an ulterior motive in finaly posting to the forum.  I am willing to believe that the more people rooting for me the better.  Thanks to all for your good thoughts
1.5cm left side AN removed Middle Fossa 1996
SSD
return of AN 3.6cm 2008

lori67

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Re: Time to say hello
« Reply #10 on: May 24, 2008, 01:07:23 pm »
Let's hope that 3083 people cheering you on will do the trick!  There will be lots of good thoughts coming your direction!

Lori
Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

leapyrtwins

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Re: Time to say hello
« Reply #11 on: May 24, 2008, 01:18:33 pm »
Hi, onceagain -

sorry that you have to go through AN treatment, once again, but I'm glad you decided to say hi as opposed to lurking.  Not that there's anything wrong with lurking, it's just hard to offer you support when we don't know you are "here"  :)

Good luck with your surgery.   I'll keep you in my thoughts and prayers.

Wishing you the best,

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

er

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Re: Time to say hello
« Reply #12 on: May 28, 2008, 04:36:16 pm »
Hello Onceagain,
I am glad you said hello, I am sorry about the regrowth.  My prayers are with now and June 4th. Like you I find comfort it knowing that there are other people out there who have gone through the same thing, which their reply are comforting to me.
eve

Debbi

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Re: Time to say hello
« Reply #13 on: May 29, 2008, 02:04:46 pm »
Hi Onceagain-

Just want to join in from New Jersey to wish you all the best.  Glad you jumped in, although veyr sorry for the reason.  sending lots of good things your way...

Debbi
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

Captain Deb

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Re: Time to say hello
« Reply #14 on: May 29, 2008, 02:13:38 pm »
Hi onceagain and welcome to the forum and so sorry you are having to go through all this again. However, your experience is of great benefit to those of us who think of ourselves as "cured" and think we are free of these things.  We have to keep up with the yearly or bi yearly MRI's and keep an eye on them.  Please know that you will find a lot of support here a well as a little humor as some of us enjoy the escape of poking fun at ourselves.

Keep us posted on your progress and choices.

Capt Deb 8)
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
Captain & Designated Driver of the PBW