Author Topic: What were your early symptoms?  (Read 21279 times)

cin605

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Re: What were your early symptoms?
« Reply #15 on: September 24, 2010, 09:02:54 am »
I had episodes of being off balance ,vertigo,sinus crap for 10 years..it would come and go...they thought inner ear infection...then mieniers...then i started waking up feelng like i had been hit w/ a base ball in the back of my head...then the tinnitus came and it was then i said o.k. go to Dr. demand catscan.My perception was also going fast...i side swiped 2 cars in 2 months...just took the rearviw mirrors right off..trying to drive down a narrow st. both time right side...then i started missing steps going down stairs and the famous you think you cleared the doorway but you didn't relly and totaly killed your shoulder banging into the wall.
Then other times i would have no symptoms at all...i went zip lining in Mexico...2 months before being diagnosed w 2cm
accousti neuroma in the inner ear canal extending into the cerebella pontine angle...kissing my brainstem is what the neurosugeon said.
soo..all sorts of thing can happen....and you never connect them till they all add up.Nothing would surprise me at this point.
i did have facial numbness and one time my face just refused to show any expression on one side...i didn't even notice my boyfriend did.I also got the corner of the mouth twitch and eye twitches.
I had surgery 2008.
2cm removed retrosig 6/26/08
DartmouthHitchcock medical center lebanon,N.H.
43yrs old

allisjbh

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Re: What were your early symptoms?
« Reply #16 on: September 24, 2010, 10:48:55 am »
I had tingling sensations on the right side of my mouth. It felt like the right side of my tongue had been scorched with a hot drink. I also had hearing loss on the tumor's side, and was just starting to get a little clumsy.
ALLISON
2.8cm x 3.8cm AN translab 12/31/09 Emory Atl Drs Olson & Mattox;  right facial paralysis: "... (facial) nerve remarkably thin..." EMG 8/10; gold weight, tarrs, & browlift 1/11 Neufeld; facial sling implant & left eye bleph 4/11 Yellin

Lizard

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Re: What were your early symptoms?
« Reply #17 on: September 24, 2010, 11:48:33 am »
I didn't have much in the way of symptoms and the balance problems were only when I was really tires.  Mostly had issues wtih headaches...
Left AN 2.5CM,retrosigmoid 11/2008, second surgery to repair CSF leak. 
Headaches began immediately.  Dr. Ducic occipital nerve resection, December 2011!!!!!

"When you come to the end of your rope, tie a knot and hang on"
-Franklin D. Roosevelt

skamper

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Re: What were your early symptoms?
« Reply #18 on: September 25, 2010, 06:29:11 pm »
The way the docs found mine, was a numbness in my lips that over 5 or 6 months then spread to my chin a little.  Since it had been going on for so long, they sent me in for an MRI that same day.  Said I had no signs of cells palasy or drooping or any thing else. 
The MRI found the tumor and I was very shocked to find out when I went to the ENT about a month later that I had absoultley no balance left on the AN side.  I flunked the test completely.  The doctor said I must have over compensated on the left side for all these years and never knew it.  It finally explained the bumping into walls and going off klilter every now and then.  But a complete loss was a shock to me.  To think your body can make up for something is amazing.  I am know post surgery and my balance is still bad.  I'm trying to do exercises to regain some it, will take lots of time, I will get better.
Keep us posted as to what you find out on your scans.  These are great people here and will help you like they helped me.
Susan
Diagnosed 12-09
AN right side 2.3 x 2.6 x 1.9
97% balance loss, minimal hearing loss
Surgery 4-2-10 at Methodist Hospital, Dr. Long and Moore
1.5 cm tumor left on 7 nerve.  Gamma knife 1-2013

leapyrtwins

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Re: What were your early symptoms?
« Reply #19 on: September 25, 2010, 07:09:14 pm »
The symptoms which led to my diagnosis were a feeling of fullness and diminished hearing in my left (AN) ear.

Once I had the MRI that showed the acoustic neuroma my ENT referred me to a neurotologist.  He did some balance tests and it became evident that I also had balance issues that I was totally unaware of.

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

Syl

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Re: What were your early symptoms?
« Reply #20 on: September 25, 2010, 07:24:50 pm »
Stand:

My first symptoms was sudden hearing loss on my right side, the feeling of fullness in that ear & tinnitus. Not long after, the vertigo began. I didn't have a clue that all those symptoms would be related. I didn't notice the poor balance until after I was diagnosed.

Syl
1.5cm AN rt side; Retrosig June 16, 2008; preserved facial and hearing nerves;
FINALLY FREE OF CHRONIC HEADACHES 4.5 years post-op!!!!!!!
Drs. Kato, Blumenfeld, and Cheung.

michelle d.

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Re: What were your early symptoms?
« Reply #21 on: September 25, 2010, 07:49:43 pm »
Wow, it's really interesting to read all these and see how different each one is! Mine, too, was very gradual...started years ago with just an "off" feeling, like a little lightheadedness, went to dr., he found nothing in my ears. I've had dental issues for the last 10 years which is too long a story to go into but basically, I thought my tinnitus was from dental work! An ENT checked me out and said I just needed hearing aids. (I didn't get them)  When my new dentist was putting on a crown, she had used light novacain....oddly, from that day, I had the numbing sensation in my mouth and couldn't taste on that side. When I told the dentisit, she was baffled, she said that never happened before and she said I should wait to have any more dental work done til I figured that out. I was convinced for a while that she had hit a nerve when she put the novacain in and waited to see if the feeling would come back, which it did not. One day, I was in the building of a ENT who I know personally and decided to just stop by and ask him if he he could help because things seemed to be getting worse and it was getting more uncomfortable. They made an appointment, he suspected an AN right away and ordered an MRI and the rest is history.  Reading all these entries helps me to see why this takes so long for us to find....because the symptoms are sometimes so vague and slow growing and can be so different, depending on size, location, etc. For each of us, it's been such a different journey!  Sorry this got so long  :o  Anyways, I hope you find out what is going on soon and keep us posted. Best to you:)  mcihelle d.
Acoustic Neuroma on right side--removed Nov. 13th, 2009 @ Strong Hospital, Rochester, NY....Translab.   50 years old

michelle d.

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Re: What were your early symptoms?
« Reply #22 on: September 25, 2010, 07:55:43 pm »
...oh yeah...and one other thing I just remembered...I have had for probably 5 years or so my eyes sort of "jump" when I was reading something. It's gone now, but I had forgotten about that until just now when I was reading other entries.
Acoustic Neuroma on right side--removed Nov. 13th, 2009 @ Strong Hospital, Rochester, NY....Translab.   50 years old

Stand

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Re: What were your early symptoms?
« Reply #23 on: September 25, 2010, 11:04:48 pm »
oddly enough, i didnt have any symptoms at all. I hit my head and went to the ER for stiches. They did a CT-scan there and noticed "something odd" and the rest is history.

A week later I was diagnosed with a 3.5cm AN compressing my brain stem. I really hadn't ever noticed a single symptom.

That is....wow....quite a story!  I'm so sorry you went through all of that.  :(  Do you feel blessed you unfortunately had to go to the ER that day?

Stand

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Re: What were your early symptoms?
« Reply #24 on: September 25, 2010, 11:11:58 pm »
Well, you guys.  I appreciate you all helping me feel better.  I mean, I invade your forum and I talk about my issue and yet you don't boot me out.  :)  I've been doing really good on the fear portion of the unknown for the past two days.  It helps that my husband's department has had training days yesterday and today.  Yesterday they did a mock rescue in a house they're going to burn.  I went to take pictures.  Then today they had a propane tank class where they set it on fire and flames shoot fifty feet into the air.  The fire chief told me to stand just 30 feet away, to be able to get great pictures.  The adrenaline of being so close to something like that really helped with my stress.  But as I'm writing, anxiety is creeping back in.  Tomorrow is my last day before the MRI.  It's set for 7am on Monday.  I really hope something is resolved.  One way or another.  The unknown, is really bad on my family.  Especially my kids.  I overheard my nearly 8 year old daughter mocking me today.  She told the others, "Don't talk so loud!  What?  You want my other ear to be ear death?"  Now of course, the ear death part is adorable.  But also, I've never said anything remotely like that.  But still the same.  I see it's affecting the kids.  So I'm hoping Monday resolves something. 

leapyrtwins

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Re: What were your early symptoms?
« Reply #25 on: September 26, 2010, 11:01:15 am »
Good luck tomorrow; hope you get some answers.

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

Pembo

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Re: What were your early symptoms?
« Reply #26 on: September 26, 2010, 04:18:20 pm »
For years I had neck/shoulder pain...like a crick in your neck...nothing horrible, just annoying.  (thought it was stress)
My lower eyelid twitched. (stress again)
I had symptoms of IBS.
I had 2 bouts with unexplained dizziness that just went away on their own.
I was tired all the time, exhausted! (I had small children)

Put it all together along with facial tingling 4 months before surgery and debilitating vertigo 3 months before surgery...= 4 cm AN compressing 5 cranial nerves and the brain stem.
Surgery June 3, 2004, University Hospitals Cleveland, BAHA received in 2005, Facial Therapy at UPMC 2006

skamper

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Re: What were your early symptoms?
« Reply #27 on: September 27, 2010, 06:36:45 am »
Good luck today with your MRI scan.  I will be thinking of you and hoping for good thoughts.  Hopefully they will get back to you soon.  My called me with results the next morning.  You are early enough today that maybe they will be read quickly.
God Bless and keep us posted.
Susan
Diagnosed 12-09
AN right side 2.3 x 2.6 x 1.9
97% balance loss, minimal hearing loss
Surgery 4-2-10 at Methodist Hospital, Dr. Long and Moore
1.5 cm tumor left on 7 nerve.  Gamma knife 1-2013

Stand

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Re: What were your early symptoms?
« Reply #28 on: September 27, 2010, 09:11:48 am »
Well, I'm home and have been for awhile.  The cyst I have in the nasal area looks huge!  Like really tumor-like.  I'm hoping someone calls me soon to tell me what's going on.  I picked up my own copy of the disc so I'm just captivated by the images.  God is so cool with how He makes the body.  So neat!  But anyway.  Of course I can't tell a thing by me looking at it.  But I do have A LOT of white spots.  Not sure what that means.  But my cyst (they already told me I have one by the CT scan last week) looks REALLY big with this mri!

msuscottie

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Re: What were your early symptoms?
« Reply #29 on: September 27, 2010, 09:28:02 am »
oddly enough, i didnt have any symptoms at all. I hit my head and went to the ER for stiches. They did a CT-scan there and noticed "something odd" and the rest is history.

A week later I was diagnosed with a 3.5cm AN compressing my brain stem. I really hadn't ever noticed a single symptom.

That is....wow....quite a story!  I'm so sorry you went through all of that.  :(  Do you feel blessed you unfortunately had to go to the ER that day?

I always tell people that the damn bungi cord (that cut my head open) saved my life. Weird how things happen, but thank goodness they do!