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Author Topic: Newbie here  (Read 3423 times)

Bets

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Newbie here
« on: August 02, 2009, 06:34:27 pm »
Hey everyone, my name is Betsy.  On Dec. 1st, 2008 I went for an MRI due to loss of hearing in my left ear.  December 2nd I went to see the specialist (Dr. Noronha) to go over the results of the MRI and found out I had an accoustic neuroma.  3.6 x 4.4 x 4.6  Terrifying!  I was 23 yrs old at the time and so scared.  Luckily I had my family with me.  Dr. Noronha, that day, sent me to Dr. Barry Hirsch (Ear, Nose, and Throat specialist) at University of Pittsburgh Medical Center.  Also, neurosurgeon, Dr. Gardner from UPMC Presbytrian came to talk to me and my parents.  To make a long story short, bc the tumor was so big, I had to have 3 surgeries.  The first on 12/29/08 w/ Dr. Gardner and Dr. Hirsch, 2nd 01/19/09 w/ Dr. Gardner, and the 3rd 06/22/09 w Dr. Gardner.  After the 2nd surgery, I was suppose to have radiation.   Suprise suprise, I found out 04/07/09 that the tumor was too big for radiation and I would have to have a 3rd surgery.  Too much radiation could damage my facial nerve.  It has been a little over a month since my 3rd surgery.  I have no hearing in my left ear.  Some facial paralysis, but that will come back.  I have issues with my left eye, but could be worse.  And some soreness at the incision.   I go for an MRI on 08/18 to see what is next.  I am suppose to have radiation.  After all I have been through, I am a lucky girl!  And thanks to excellent doctors!  I wish I would have known about this site months ago.  Has anyone had experience with the gamma or cyber knife??? 
Betsy
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3.6 x 4.4 x 4.6 Retrosigmoic 12/29/2009, 01/19/2009, 06/22/2009  Dr. Paul Gardner & Dr. Barry Hirsch University of Pittsburgh Medical Center
After 3 surgeries...no hearing in left ear. Some facial paralysis, but will come back.  Things could be worse, I am so thankful!

Kaybo

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Re: Newbie here
« Reply #1 on: August 02, 2009, 07:43:59 pm »
Hi Betsy & welcome!! Glad you found us...better late than never! Please feel free to ask any question here - we talk about everything!! Also, I would be more than happy to chat w/ you on the phone I'd you'd like-just PM me!

K ;D

ps-your mom wouldn't happen to be an author, would she?
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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!

mandy721

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Re: Newbie here
« Reply #2 on: August 02, 2009, 08:44:21 pm »
I am new here too.  My husband was diagnosed at the very end of May and his surgery is scheduled for this coming Tuesday.  This community has been such a source of information and comfort for me during the past few months.  No gamma or cyber knife experience here.  Depending on the outcome of the surgery, that might be a possibility down the road.   A big hug to you.

Mandy
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Husband diagnosed 5/30/09 with 3.2cm right AN
Surgery at  Columbia Presbyterian 8/4/09
Platinum eye weight implant - 8/17/09
17 days in hospital and rehab
SSD, facial weakness, some tinnitus, headaches , balance and eye problems

sgerrard

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Re: Newbie here
« Reply #3 on: August 02, 2009, 09:08:39 pm »
Okay, I hope I don't tread on any toes here.

Betsy, I think your Mom found this site last month. Even though you didn't know us yet, we were cheering you on through your surgery. See if these two topics sound familiar:

http://anausa.org/forum/index.php?topic=9869.0
http://anausa.org/forum/index.php?topic=9929.0

We are very glad to have you on board in person now. :)

I have had CyberKnife. I was lucky to get diagnosed when my AN was very small, less than 1 cm across. Compared to surgery, going through radiation treatment is easy, so don't worry about it. You made it!

Welcome to the forum, and all the best to you.

Steve
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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.

raj_06

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Re: Newbie here
« Reply #4 on: August 02, 2009, 10:50:05 pm »
Hey Betsy,

Welcome to the forum..I had my AN surgery three years ago, and I was 22 then..well, I don't have cyber knife experience but I do know that things will get better..So, keep up with the positive attitude and you will be fine.

Take care,
Raj
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"After all these ordeals, I still say all is well":)

Bets

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Re: Newbie here
« Reply #5 on: August 04, 2009, 05:14:37 pm »
thanks everyone!!!   ;D
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3.6 x 4.4 x 4.6 Retrosigmoic 12/29/2009, 01/19/2009, 06/22/2009  Dr. Paul Gardner & Dr. Barry Hirsch University of Pittsburgh Medical Center
After 3 surgeries...no hearing in left ear. Some facial paralysis, but will come back.  Things could be worse, I am so thankful!

Mickey

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Re: Newbie here
« Reply #6 on: August 05, 2009, 07:51:49 am »
Hi Betsy! You are a brave young lady who seems to be doing everything necessary to get well. Just keep on investigating your options to complete your journey and follow your heart on what to do. Time heals all wounds especially with you so young with so much life ahead. Your doing great! God Bless, Mickey
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Jim Scott

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Re: Newbie here
« Reply #7 on: August 05, 2009, 01:14:51 pm »
Hello - and welcome, Betsy!

I regret that I didn't respond to your introductory post sooner.  I intended to, then got distracted and forgot, but here I am, now!   

Like you, I was diagnosed with a large AN that was 'debulked' to render it small enough for radiation. Fortunately, that was accomplished with a single surgical procedure (retrosigmoid approach) and I emerged with my symptoms gone (I remained SSD, as I was before the surgery) and no post-op complications, thanks to a very skillful neurosurgeon, his capable assistant (also a neurosurgeon) and a team of OR personnel that were hand-picked by my neurosurgeon.  Following a 90-day 'rest period' (my doctor's term) I underwent 26 carefully programmed (by my neurosurgeon and a very sharp radiation oncologist) FSR treatments intended to destroy the remaining tumor's DNA and effectively 'kill' it.  They were painless, uneventful and apparently successful. I consider myself blessed because I know many very sincere prayers were said for me as I underwent the surgery and radiation. 

I didn't undergo CyberKnife or GammaKnife so I can't offer any personal advice regarding those treatments, but many folks that post here are GK or CK 'veterans' so I'm sure they'll respond to you.  I hope your incision soreness and eye issues are soon resolved and that your MRI shows a greatly reduced tumor and that any subsequent radiation treatment is completely successful.  Please stop by any time (we're 'open' 24/7).  :)

Jim
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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.

madison

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Re: Newbie here
« Reply #8 on: August 05, 2009, 04:52:16 pm »
hi betsy-
  i was diagnosed with AN and had gamma knife treatment at univ. of penn. i too am young(37- but feel younger than that) but i have had a multitude of health issues. my next mri is in october. that will be my 1 and a half yr. exam. the first one showed some necrosis-the second one slight swelling(which is common from the radiation) and this one...we'll have to wait and see. i just wanted to tell you that i was worried about having gamma knife because of the frame they attach to your head. i constantly had visions of them drilling holes in my skull and whatnot....but i have to say, i felt absolutely nothing! drugs can be a great thing sometimes :D i know it's hard not to worry, but really- it was nothing. i think you are brave for what you have been through. please keep us posted & take care.
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Pennsylvania:female: 40 yrs. old
R ACOUSTIC NEUROMA;GAMMA KNIFE FEB. 2008
multiple meningiomas
scheduled for translab @ Thomas Jefferson in Phila. Pa. on 6/18/2012

Vivian B.

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Re: Newbie here
« Reply #9 on: August 05, 2009, 06:19:11 pm »
Hi Betsy,

I can't answer your question as I haven't been treated yet. I just wanted to welcome you to the forum and wish you all the best and glad that you have found this site. You will find a lot of support here. There are a lot of sites on-line about gammaknife and a lot of people on the forum have been treated with it and done very well. Good lucik!

Vivian
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CPA AN(most likely meningioma) 1.6cm by 1.5cm by 1.9cm diagnosed early March 09. Watch and Wait.
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