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Author Topic: Re-Introduction  (Read 2881 times)

Twindy

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Re-Introduction
« on: November 04, 2012, 07:09:22 am »
Hello,
I first introduced myself to this board last Feb. when I was diagnosed with an AN.  Things moved rather quickly and I was in a state of sort of numbed panic.  I would like to thank all of you who calmly listended, gave advice and alleviated fears.  If it weren't for this board, I would have rushed into surgery believing it was my only option.  Now that some time has passed, I would like to re-introduce myself in a more rational manner.
I first went to get my hearing checked due to ever so slight hearing loss--no other symptoms.  I was referred to an ENT due to the loss being in only one ear.  I went into the ENT one morning before work, thinking it would take 1/2 hour and I'd be on my way.  He thought I should get an MRI to rule anything out so was sent across the hospital yet that morning, annoyed that I was delayed in getting to work.  Then I just remember the words brain tumor, surgery, cutting a hole in my skull, moving the brain aside....and I didn't really hear the rest.  It was suggested I come back later in the day with my husband, which I did.  I was told surgery was my only real option (there were others I was told but I would not be interested), and on that same day, scheduled surgery for 2 weeks.  I never did get to work! I was told recovery would be 2-3 weeks--plan on 4 but might be possible to go back to work after 2.
 I found this board in the wee hours of that night and fired off my questions.  I had not entertained other options until the wonderful people here encouraged me to slow down and take my time.  I met with a radiologist, and after an agonizing week, cancelled my surgery to take more time to decide.  Fast forward through the next couple of months of research, second opinions, more research, I finally decided on radiation.  I feel good about my decision, but after the treatment, I needed some time to just not think about ANs.  I had a great summer with no symptoms--reconnected with my kids, hubby, and life in general. 
Symptoms started to creep up at about the 3 month mark--wonkiness that comes and goes, running into my husband when we take nightime walks, whoosing noises, and now tinnitus.  So, I just wanted to say hello again as I will be back here.
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Cheryl R

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Re: Re-Introduction
« Reply #1 on: November 04, 2012, 07:33:10 am »
Twindy, I have been wondering how you have been doing long term.   Hopefully some of the now symptoms are from some swelling..      Time will tell for you.
     Not fun to have wait and wonder.                        Cheryl R
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Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

Twindy

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Re: Re-Introduction
« Reply #2 on: November 04, 2012, 10:05:07 am »
Cheryl,
Hello again!  You were so very helpful to me during those first months!  Yes, hopefully some swelling and a sign that things are working!  Good to hear from you.
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Jim Scott

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  • 1943-2020 Please keep Jim's family in your hearts
Re: Re-Introduction
« Reply #3 on: November 04, 2012, 02:29:09 pm »
Twindy ~

I hesitate to say 'welcome back' only because I don't want to seem insensitive to the fact that you're posting due to concerns about recurring symptoms.  Still, I'm glad you have the trust in our members to return to the ANA discussion forums to update us.   For what it's worth, I concur with Nurse Cheryl thst your symptoms are more than likely caused by post-radiation tumor swelling.  I had FSR on a debulked AN and experienced swelling at 3-6 months (but no symptoms). Your next MRI should tell your doctor a lot.

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.

It is what it is

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Re: Re-Introduction
« Reply #4 on: November 04, 2012, 05:46:37 pm »
Thanks for coming back to the list.  I was diagnosed and treated after you left and am interested in hearing about your experiences. 

Karen
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.7cm, left side AN , Tinnitus, Hearing preserved, Middle Fossa 8/1/12 at HEI, Drs Friedman and Schwartz, Sharing your story is extremely helpful to me.

BeckyMax

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Re: Re-Introduction
« Reply #5 on: November 04, 2012, 07:47:17 pm »
Hi, Twindy.  You and I were diagnosed around the same time, I remember reading your story back then.  I am still waitand watch, my 6 month MRI had no growth.  Radiation is my plan if treatment is necessary.  What type did you have?   I too think you might be experiencing symptoms related to swelling.  Do tell us more and keep us updated.

Becky
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7mm x 5 mm Left AN, diagnosed 2/9/12
7mm x 6 mm  8/12
9mm x 7 mm  8/13
Cyberknife 12/13

Twindy

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Re: Re-Introduction
« Reply #6 on: November 08, 2012, 12:23:56 pm »
Thanks all for the welcome!  Becky, I had Linac accelerator.  My understanding is that it's just a different sort of machine.  I was told that for linac you need someone who really knows that machine, which my dr. does.  But I think they are not as widely used.  I had a head frame and they moved me and the machine several times during treatment.   Jim, thanks for the welcome back--not at all insensitive as I never expected to be without any symptoms.  Good to be back with people who understand.
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