Author Topic: Newbie and very confused  (Read 4432 times)

Nancy Drew

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Newbie and very confused
« on: January 25, 2006, 03:48:20 pm »
I was diagnosed before Christmas and am in the wait and watch mode since the AN is small 4mm x 5mm.  I also do not have any hearing loss so they say.  I presented with severe vertigo which lasted for over a month.  ENT sent me to get a MRI just in case (don't really know if he was looking for an AN or something else).  Anyway the specialist said the vertigo probably wasn't from the AN (perhaps a migraine symptom without the headache)--still confused about this.  Since the first week of Jan. I haven't had any symptoms, I guess.  I'll catch myself being a bit dizzy, off balance with a slight high pitched noise in the ear, but it's nothing to get all excited about.  I figure I might just be looking for something that is not really there.  I do have a hard time with background noise and hearing words correctly, but the hearing test said I am ok.  What I am looking for here is feedback from you about having what seems to be no real symptoms after being diagnosed.  Or does it just come and go?  Will I have another bout of vertigo only to hear the doctor say it is not a sign of the AN.  It's like is it really there, even though I saw it on the MRI.  I just don't know what to expect.  Is my mind playing tricks on me?  Thanks ahead of time for any thoughts you might have.
12/05 AN diagnosed left ear 4.5mm
06/08 6mm
Gamma Knife 10/21/08
1 year MRI  6.8mm x 5.5mm
2 year MRI  5.9mm x 4.9mm
3 year MRI  6.5mm x 6.0mm 
Slight Hearing Loss Post GK

Swedish Gamma Knife Center
Englewood, CO
Dr. Robert Feehs

Larry

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Re: Newbie and very confused
« Reply #1 on: January 26, 2006, 12:12:08 am »
Nancy,

Everyone has different symptoms. I noticed hearing degradation on the phone as the only symptom. I didn't have vertigo. Others say they have. I must say that I am not impressed with hearing tests. You know yourself whether your hearing has dropped ot not. There are a number of people in the watch and wait mode as well, including myself. If your hearing gets worse, you may want to do something about it coz it will not get better post treatment. Be strong and don't let it interfere with your life.



Larry
2.0cm AN removed Nov 2002.
Dr Chang St Vincents, Sydney
Australia. Regrowth discovered
Nov 2005. Watch and wait until 2010 when I had radiotherapy. 20% shrinkage and no change since - You beauty
Chronologer of the PBW
http://www.frappr.com/laz

Kilroy1976

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Re: Newbie and very confused
« Reply #2 on: January 26, 2006, 07:47:08 am »
Nancy, you might want to try using the phone with your AN-side ear while you're watching and waiting. I've heard that trouble with the phone is one of the first ways that hearing loss can present itself, and it's a "hearing test" that you can give yourself every day.

As far as the vertigo/dizziness/loss of balance, you could always go to get the usual set of inner ear tests. The ear is the prime suspect anytime a balance issue arises, so ruling out an ear problem would go a long way toward tapping the AN as the cause of the vertigo. You never know, God might have sent you an inner ear infection so that you'd get an MRI. ;)
1.8cm AN
Linac
December 13, 2005
Shands Hospital--University of Florida

jamie

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Re: Newbie and very confused
« Reply #3 on: January 26, 2006, 06:05:41 pm »
You never know, God might have sent you an inner ear infection so that you'd get an MRI. ;)

Yeah, an earache due to eustachian tube dysfunction is what prompted me to go to the doctor, which led to the MRI. I wish God would not have put the tumor there in the first place, and saved us both the trouble, lol.   ;D
CyberKnife radiosurgery at Barrow Neurological Institute; 2.3 cm lower cranial nerve schwannoma

Kilroy1976

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Re: Newbie and very confused
« Reply #4 on: January 27, 2006, 09:16:59 am »
The Lord giveth and the Lord taketh away?
1.8cm AN
Linac
December 13, 2005
Shands Hospital--University of Florida

jamie

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Re: Newbie and very confused
« Reply #5 on: January 27, 2006, 10:34:48 am »
Hopefully he taketh away the tumor.  ;)
CyberKnife radiosurgery at Barrow Neurological Institute; 2.3 cm lower cranial nerve schwannoma

Kilroy1976

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Re: Newbie and very confused
« Reply #6 on: January 27, 2006, 12:04:52 pm »
exactly!
1.8cm AN
Linac
December 13, 2005
Shands Hospital--University of Florida

Desilu

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Re: Newbie and very confused
« Reply #7 on: January 28, 2006, 08:39:11 pm »
Hi Nancy,
     
I was on the wait and watch program for 5 years. It was then that my tumor started to grow. My only indication that I had a problem was a loud ringing in my ear that would last for about a week and then go away. Of course, my family Dr. had no clue so he sent me to an ENT who order and MRI and bingo! I had an Acoustic Neuroma. Everyone is different and so are the symptoms. You know your body better than anyone else. Pay attention to it. It may help to keep notes of the day and the symptom so you can be more prepared for your next Dr. visit. Don't be afraid to ask questions, that's what we are hear for, to help one another. If I can be of further help, please feel free to email me. Hope everything works out well for you! Ann
HEI July 26, 2005
5mm X 8mm Left AN
Middle Fossa
Dr. Brackmann & Dr. Hitselberger

Boppie

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Re: Newbie and very confused
« Reply #8 on: January 28, 2006, 11:50:43 pm »
My first indication of a hearing loss was that I couldn't hear the wall clock ticking after I wound it up.  I didn't have one clue my hearing was diminished so much before that day. Tinnitus and hearing loss remained my only symptom until diagnosis.   Of course, tinnitus is still there!
« Last Edit: January 28, 2006, 11:53:31 pm by Boppie »

lmurray69

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Re: Newbie and very confused
« Reply #9 on: February 02, 2006, 04:08:02 pm »
[even though your tumor is small it doesnt mean that it is not causeing the dizzy spells. It could be where the tumor is...Mine is small but on my ballancs nerve....ta da   dizzy and dingy too wish you the best . but the mri is only a small thing if you can face being in the machine.  good luck and god bless 
radiation feb 05, gammaknife, tumor is 1.2x0.08/ surgery Nov 1st 2006 Dr House/Swarts/

ppearl214

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Re: Newbie and very confused
« Reply #10 on: February 03, 2006, 01:34:45 pm »
Hi Nancy,

I'm not far off from you at all... my left IAC AN is just slightly larger (MRI this week shows it to be 6.7mm x 9mm).  I had been experiencing some facial numbness and although some balance issues (the family/friends enjoyed calling me a natural klutz), some minor ringing in left ear, but that was it...  I also use the telephone on my left ear (funny how the AN ear does seem to work better with phones!)

Know that your mind is not playing tricks with you.... just a slight "headgame" but since you and I are in the same boat, glad to see someone else just as confused as me... and all everyone says here is extremely appreciated! 
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"