Author Topic: Do I have an AN?  (Read 3765 times)

emmyb

  • Newbie
  • *
  • Posts: 2
Do I have an AN?
« on: June 08, 2010, 08:31:14 pm »
Like many others before me I have been "creeping" on this site for about a week now.  What a wonderful and compassionate group of people you are.  I had an MRI done with and without contrast on Friday June 4th.  I have yet to hear any news and am anxiously awaiting the results.  In the meantime I thought it might be a good idea to see what others with some of these same experiences think.  Back in February of this year I had a severe and sudden episode of vertigo.  It was so bad I went to the ER where the doc told me to relax vertigo is just "bad luck" and its not like you have a brain tumor or anything.  He said the spinning would stop in a few days.  The "spinning" continued for weeks.  So bad during the first two weeks that I could not even get out of bed.  After several weeks it slowly subsided and I was able to continue normal activities.  My PCP said it was likely caused by a virus and would take some time for the damaged nerves to heal themselves.  I continued struggling with balance, BPPV, pulsatory tinnitus, pain in and around the ear, and random dizzy spells.  Also during this time I got two of the worst sinus infections ever.  I had never suffered from these before.  After a couple of months my PCP referred me to my ENT who with the help of an audiologist conducted a hearing test (which I passed) and a VNG that showed significant weakness in my left side.  This is when I was scheduled for an MRI.  During the MRI the technician pulled me out of the tunnel to inject the contrast and said "so you are having trouble with your left side?"  I immediately asked if she could see something.  She of course stated that she forgot to ask me before we started which side was affected. (Why would she have just guessed it was the left, unless she could see something)  I told her that I felt like there was probably something there to which she replied that she is not a doctor and couldn't really say anymore.  After the MRI I felt really dizzy and nauseous.  Just wondering what you would make of this?  How often to AN's present themselves without any hearing loss?  Any insight anyone could give would be greatly appreciated. 

Thanks,
Terrified in Ohio

leapyrtwins

  • Hero Member
  • *****
  • Posts: 10826
  • I am a success story!
Re: Do I have an AN?
« Reply #1 on: June 08, 2010, 10:07:06 pm »
Do you have an AN?  Good question.  Only your MRI knows for sure  :)

I don't want to second guess the MRI tech's behavior, but her question to you about your left side does sound strange.  My take is, she saw something, started to tell you that, and then caught herself - since it's not her job to give you the results.

Some of your symptoms could be attributed to an AN, but they could also be attributed to something else.  The MRI results will give you a definitive answer.

Not all ANs are diagnosed because of hearing loss; some people don't have hearing loss due to the size and/or location of their AN.

If it is an AN, it's normal to be terrified, but we're here to help you with that.  And if you are diagnosed, you should contact the ANA for their informational brochures.  There is an excellent group of doctors in Cincinnati (Tew, Pensak, and Theo . . . - I forget the complete spelling) - you'll find them on the main page of the ANA website under "medical resources".

Best,

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

kenneth_k

  • Guest
Re: Do I have an AN?
« Reply #2 on: June 09, 2010, 04:05:51 am »
Hi Emmyb.

My onset of symptoms was also vertigo (diagnosed as virus). Later came the hearing loss.
How strange, my first technician also spilled his guts by accident.

He said, perhaps I should get another MRI with contrast "if the doctors want to see it more clearly". See what????
A week later I was told, that I did indeed have an AN.

I hope you get your answers soon and you find this forum a place for comfort. If you do have an AN, remember it is benign and curable. Unfortunately, it does generate a lot of stress when waiting.

Best regards, Kenneth.

moe

  • Hero Member
  • *****
  • Posts: 1697
Re: Do I have an AN?
« Reply #3 on: June 09, 2010, 08:33:41 am »
Hi Emmyb,
Very interesting turn of events for you. I'm hoping you don't have an AN, but if you do this is the place to be for advice, support, and a few good laughs along the way :)

Techs need to wear duct tape over their mouth when doing their work! Now you are wondering, wondering, and I'm sure it's driving you a little nuts. 
Hopefully you will hear soon, otherwise,give your doctor a jingle. It HAS been almost a week (ok Friday is the week point). Inquiring minds want to know.
Hang tight,
Maureen
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

Lizard

  • Hero Member
  • *****
  • Posts: 791
Re: Do I have an AN?
« Reply #4 on: June 09, 2010, 10:53:07 am »
Welcome to the site and hopefully you get your results quickly as whatever is going on, an AN or something else.  If you do have an AN just make sure you get with a great Dr. who has lots of experience.  More opinions the better.
Oh and my technician also asked a strange question and not that I had any idea at the time, but he wanted to know if I had any hearing loss on the left side.  I only had minor loss and the only noticeable loss was that I tended to use the phone on the other ear.

Make sure to send updates as soon as you hear and hang in there we know this can be a little unnerving, but once you have a diagnosis you should begin to feel some of the pressure lift off your shoulders. 
Liz
 
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

emmyb

  • Newbie
  • *
  • Posts: 2
Re: Do I have an AN?
« Reply #5 on: June 09, 2010, 12:19:15 pm »
Just a quick update.  I got a call this morning from my PCP who told me that the MRI report was in and that it showed I have a cystic mass in the cerebellopontine.  I'm not exactly sure what that means but it doesn't sound good.  I'm not sure if these types of tumors are considered AN's or not.  I have an appointment with the neurologist this afternoon and hopefully he will be able to explain it in more detail. 

Jim Scott

  • Hero Member
  • *****
  • Posts: 7241
  • 1943-2020 Please keep Jim's family in your hearts
Re: Do I have an AN?
« Reply #6 on: June 09, 2010, 01:34:52 pm »
Emmy ~

Thanks for the update - and I'm pleased to learn that you don't have an acoustic neuroma.  A cystic mass in the cerebellopontine angle is similar to an acoustic neuroma and may require surgery but I'm not a doctor and won't speculate beyond that.  As you noted, the neurologist you're consulting with should be able to explain, not only the nature of the cyst but what can be done to address it.  I trust that this will work out well for you in the long run.  Feel free to post here again, if you wish.  We're quite an inclusive group! 

Jim
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.

Lizard

  • Hero Member
  • *****
  • Posts: 791
Re: Do I have an AN?
« Reply #7 on: June 09, 2010, 01:48:09 pm »
I echo Jim, AN or not we'd love to keep hearing your updates and the progression of your cyst.  That word sounds much better than tumor, go with that one  :D
Thanks for the update!
Liz
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

moe

  • Hero Member
  • *****
  • Posts: 1697
Re: Do I have an AN?
« Reply #8 on: June 09, 2010, 09:57:59 pm »
Emmy,
Sorry to hear that you  have something in there - a "cyst."  I hope it is something surgically treatable so you can be rid of it.
Let us know what the doc says, this is something different (at least for me).
Maureen
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty