Author Topic: Introduction, I'm-------  (Read 14470 times)

allenkb

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Re: Introduction, I'm-------
« Reply #15 on: April 15, 2005, 05:54:33 pm »
Hi,

My name is Karen.  For the last few years I have been experiencing right ear pain, facial numbness on that side, tearing from the right side of my right eye, dizziness, sounds in my ears at night like cicadas and now I am having trouble swallowing.  I finally told my dr. all of this, at the risk of sounding like a crazy hypochondriac, and am schduled for an MRI on the 25th of April to check for AN.  I have checked out online what AN is.  And I truly believe my MRI will come back with that diagnosis after reading the symptoms.  I am nervous.  Mostly because everything I read says by the time you get facial numbness the tumor is large.  I am hopeful I don't have this, but it really seems I will be positive based on symptoms.  How do you wait without making yourself sick?  And if it is AN, how do you get through the shock and move onto being able to make good decsions about your future?

Thanks.

GM

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Re: Introduction, I'm-------
« Reply #16 on: April 16, 2005, 08:50:14 am »
Karen,

AN's are strange things, and everyone reacts differently to them.  If you have a tumor (and hopefully your MRI will not come back as positive), it may not be large.  It all depends on where it resides.  As for waiting and making yourself sick...try to not panic...you really don't know anything yet.  But, you are already getting yourself prepared in case you do have an AN...which is great news because that means that you are ready for the challenge.

As for getting through the shock...well everyone accepts it differently.  I was positive I just had tinitus, even though I had researched AN's, I was just sure I couldn't have one.  I was wrong.  I spent the afternoon in shock, and then decided that I was NOT going to let this rule my life.  I decided to research until I dropped...which I did.  I looked in medical libraries (at hospitals), local libraries, the web, until I was positive that I found all the information that I could about AN's...the different types of treatments [watch and wait - surgery - and radiation], as well as the individual types of surgery and radiation.  I literally filled a 3" binder.  Then I sorted it all out and made a decision on how I wanted to treat it.  The hardest parts are the initial diagnosis and then deciding what to do.

But, there are many of us here...that you can vent to, relate to, and bounce stuff off of.  You're not alone...welcome.  Now's the time to talk with family, friends, and significant others.  The good news is that if you had to have a tumor...this is the one to have!  It's slow growing, and not cancerous!  This gives you time to research and make up your mind.  Hope this helps.

Gary
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!!

vjharris

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Re: Introduction, I'm-------
« Reply #17 on: April 17, 2005, 10:05:11 am »
Hi,
I was diagnosed with a 2cm right sided AN or meningioma in early April. No really troubling symptoms that I'm aware of except for mild occasional blurred vision and a couple of migraign headaches (with auras). My family doc only recommended the MRI because my mother suffered a ruptured brain aneurysm about 9 years ago. So I guess I am lucky that it was picked up before I noticed any trouble. I'm not sure if surgery or gammaknife options have any pros or cons if my problem turns out to be a meningioma instead of an AN. Any thoughts? Also, I've picked up a great deal of (both scary and reassuring) information through this group. It really helps to know other people have been through the same thing. Thanks!
vjh
2.2x2.37 right side meningioma or acoustic neuroma
Gamma Knife Dec 5, 2006

ablittle

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Re: Introduction, I'm-------
« Reply #18 on: April 17, 2005, 03:59:17 pm »
Hello to all diagnosed with acoustic neuromas... the news is not all doom and gloom.
I was diagnosed in August of '04 with an approximate 2cm tumor, touching the brain stem.
My husband and I did extensive research, spoke and met with several neuorsurgeons and radiation oncologists. We were both terrified of the surgical procedure. My Doctors were Dr. Hitselberger and Dr. Rick Friedman with the House Ear clinic and the surgery was performed at St. Vincent's Medical Center in L.A (an excellent place to be cared for if you're an AN patient). Both were incredible surgeons and professionals with excellent people skills. They made you feel extremely confident about their abilities. After the research of radiation vs. conventional surgery, we opted for the surgery and I am so happy with my choice. I was doing phenomenal 2 days after my surgery and have been consistently better everyday. No complications whatsoever! I am a sole proprieter and have been able to fully run my business within 8 weeks after surgery. I have no balance or driving challenges. Due to the nature of my business, i'm driving and walking around all day.
I'm up early, work late and occassionally get a chance to work out. Attitude is everything and I would advise anyone diagnosed with this to do your research. Talk to several people who have been through surgery and radiation, read various materials and data from unbiased sources.

eballen

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Re: Introduction, I'm-------
« Reply #19 on: April 23, 2005, 02:19:37 pm »
Hello,
I'm new to this discussion forum.  I was diagnosed with a right-side 2cm AN in Feb05.  I am scheduled for translab surgery in Atlanta in June05.  I have no hearing loss or balance issues at this point, just ringing in my ear and pain behind my ear and facial numbness. This forum has provided me with lots of information and has been helpful to read that others are going through same thing as me.  This is a very helpful site!

Russ

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Re: Introduction, I'm-------
« Reply #20 on: April 23, 2005, 04:01:04 pm »
Hello,
I'm new to this discussion forum.  I was diagnosed with a right-side 2cm AN in Feb05.  I am scheduled for translab surgery in Atlanta in June05.  I have no hearing loss or balance issues at this point, just ringing in my ear and pain behind my ear and facial numbness. This forum has provided me with lots of information and has been helpful to read that others are going through same thing as me.  This is a very helpful site!

  Hi
   Guess I wasn't at the consultations nor have seen the MRIs but it seems a shame to sacrifice good hearing. Deafness is guaranteed with trans-lab. Was the middle fossa removal option discussed that you might at least have a chance of retaining hearing? At 2 cm. the AN is just in the medium size range.
   Best wishes to you!
   Russ

eballen

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Re: Introduction, I'm-------
« Reply #21 on: April 25, 2005, 07:11:23 am »


 Hi
 Guess I wasn't at the consultations nor have seen the MRIs but it seems a shame to sacrifice good hearing. Deafness is guaranteed with trans-lab. Was the middle fossa removal option discussed that you might at least have a chance of retaining hearing? At 2 cm. the AN is just in the medium size range.
 Best wishes to you!
 Russ
Quote

The middle fossa was not a preferred treatment by either of 2 neurosurgeons that I spoke with.  Translasb and Retrosig were the 2 preferred methods based on size.  Chance of saving my hearing was 50-50.  Since facial numbness is my primary complaint, I wanted them to have the most direct route and ability to see facial nerve during surgery.  My hearing is gradually getting worse as the last 2 months have passed by.  I have no idea what it's like to not be able to hear on one side, but much more worried about long term facial issues.  Not sure if that's the best thing to worry about, but for me it's a concern.

Thanks,
Lisa

Becky

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Re: Introduction, I'm-------
« Reply #22 on: April 25, 2005, 09:34:47 am »
Hi Lisa,
I had translab for a 1.4 cm.  I wish I could have had mid fossa, in retrospect.  Translab is not a bad choice, as it does involve less manipulation of the brain/retraction than the other 2 methods.  Mine was smaller than yours, tho.  I went with what the doctors seemed to feel most comfortable with and they recommended translab for me. 

We're all so helpless, you know.  We rely totally on our doctors.  I guess if I hadn't developed other problems with my neck post operatively, I would be satisfied with the translab.  They told me they had to cut muscles, but I understand that translab does not involve the cutting of muscles.  So, I don't know what happened.

Becky