Author Topic: small AN with symptoms  (Read 5700 times)

cindysip

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small AN with symptoms
« on: January 29, 2007, 03:20:26 pm »
I went to the ENT in December due to recurring vertigo, dizziness and balance problems. Last week I learned that I have hearing loss of high pitch sounds and a 3mm AN (lateral portion of the left IAC). Where is the lateral portion of the IAC?  ???

From what I have been reading people don't generally present with symptoms with such a small tumor. Then again, I am usually the exception to every rule.

I get dizzy when I bend over, role over in bed, lie down or get up or tip my head to the right. I have to be careful when I walk as I sometimes find myself falling to the right side.

Needless to say, I am attached to my computer doing research. I have learned so much from reading through the posts here.

Friday I sent my films to House. I have an appt with Dr. Roland (NYC) in March.

A few weeks ago my PCP told me that 2007 was going to be a better year for me; tonight I will tell not to run out and gamble on anything else. It has been one thing after another for me the past two years. I am determined to not let this get me down, just one more hurdle to overcome.

Cindy
Diagnosed 1/07 2mm AN - symptoms included spinning sensations when awakening, balance problems & mild hearing loss
6/07 - followup MRI no growth
6/08 - no growth, hearing unchanged

Lorenzo

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Re: small AN with symptoms
« Reply #1 on: January 29, 2007, 11:41:21 pm »
HI,

A friend of mine had a 7mm An which gave her all sorts of problems too. Personally, I can trace my first symptoms back to 15 years ago with severe vertigo that lastet for a few months with short episodes of that period. At that time I guess the AN was starting to grow.

One good  thing about such a small AN is that it gives you time to look into options and consider what treatment route to go.

And lastly, welcome to this great family.

Ciao, Lorenzo

Obita

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Re: small AN with symptoms
« Reply #2 on: January 30, 2007, 06:30:14 am »
Hi Cindy and welcome!!

Sorry you need to be here but happy you found us.  A very small AN is good!!

Someone will know your answer about the IAC......

Another New Yorker?  That makes about 6 new ANs out east in the last few weeks.

I have seen Dr. Rolands name on here quite a bit lately.  He must be the Dr. of choice in your area.

Good luck and see you around, Kathy
Kathy - Age 54
2.5 cm translab May '04
University of Minnesota - Minneapolis
Dr. Sam Levine - Dr. Stephen Haines

kjmema

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Re: small AN with symptoms
« Reply #3 on: January 30, 2007, 09:35:43 am »
High Cindy,
Welcome to " It's a Small World"  and too bad this isn't Disney World.  I have a 3mm AN rt. side and I also have some dizzy moments.  It just comes on at strange times.  I'll sort of list to the left.  Also get dizzy at night and I've learned already to be careful if I get up to use the rest room in the dark.  I went to my daughters indoor swimming party and had to sit down most the time.  The waves on the water, lights etc. had me reeling.  I'm also getting more headaches.  I have ringing in my ear, but not too bad, YET and a few other things going on.   It's always better to have something small rather than something large be it tumors, broken bones, etc., so in that sense we are lucky.  Unless it is choc. and then large is better. 

In your research efforts you will find this site invaluable.  I spent almost 5 weeks on the computer every day and am proud to say I knew more that the three doctors I have spoken to.  I actually corrected them.  I'm no genius but the phrase "knowledge is power" is very true.  It's not a Ha Ha I know so much but just the feeling that you are in charge of the situation.   Don't rush into anything .  You have plenty of time to sort things out both emotional and physical.  I'm getting another MRI in March which will be 3 months out.  For me waiting 6 months is just too long.  Maybe if the thing stays stable for a year or two I'll relax and go for longer periods. 

Just take a deep breath and keep reading.  Remember that a lot of the good people on this forum have had much larger AN's and a lot of really sad and life changing problems and despite that they are still functioning well and have for the most part great outlooks on life.  Just reading their posts has given me so much encouragement.

With us "small" AN people we have to weight the options of TIME very carefully.  Do we wait for more symptoms to appear?  Do we take the risks of surgery and the complications?  Do we go the radiosurgery route and perhaps have the tumor swell and have more problems for a year or so?  We still have a lot of things to consider and it can take over your life pretty quickly. 

You sound like you have had other health problems  so this can be overwhelming.  I was totally healthy until Aug. 26 last year.  Since then I'm had several things going and no resolution to the other issues.  But life goes on and I'm adjusting to the fact that my face numbness, headaches, etc. may never be diagnosed.  I've had 2 CT scans, One MRI and they've taken enough blood to make me an official donor.   Also hearing test and an Evoked Potential test.  Tested for autoimmune illness's also.  The pt. being that it takes time, doc. apts. etc.to stay on top of all this but it's doable.  You have joined a great support group and don't hesitate to write personal notes to people.  I've even talked to a few on the phone.  My husband is a bit "blank" when it comes to medical things so this is my sounding board. 

Hang in there and BOOKMARK this site. 

Karen
left side AN 3mm IAC watch & wait hearing 100% balance slightly off

kjmema

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Re: small AN with symptoms
« Reply #4 on: January 30, 2007, 09:54:59 am »
Cindy,
It was my granddaughters swimming party...LOL   I also sent my MRI to House.  They have called me twice to check in.  Also sent my MRI to one of the doctors on this site.  http://www.cyberknifesupport.org/ This group of doctors will answer question on line.  A great source of information.
My AN is "centered in the mid AIC" . Try this site for some information.  http://www.michiganear.com/doctors/anphotos.html  type in Acoustic Neuroma pictures and you'll find some sites that will show MRI's and you can figure out the lateral location.  Good luck
left side AN 3mm IAC watch & wait hearing 100% balance slightly off

Sam Rush

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Re: small AN with symptoms
« Reply #5 on: January 30, 2007, 11:43:00 am »
Lateral IAC  means toward the middle ear, away from the brain stem, which is GOOD!!! 
1 cm AN translab, Dr. Brackmann, Dr. Schwartz, Dr Doherety HEI   11/04   Baha 7/05

cindysip

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Re: small AN with symptoms
« Reply #6 on: January 30, 2007, 02:15:31 pm »
I can't thank you enough for all the support...just knowing that there are others out there makes this so much more bearable. I am thankful I have the luxury of time to consider all the options. Each day I learn more which helps a great deal.

Cindy

Diagnosed 1/07 2mm AN - symptoms included spinning sensations when awakening, balance problems & mild hearing loss
6/07 - followup MRI no growth
6/08 - no growth, hearing unchanged

ppearl214

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Re: small AN with symptoms
« Reply #7 on: January 30, 2007, 03:30:28 pm »
Hi Cindy and welcome.

Like you, at time of diagnosis, mine was 7mmx5mm.... so, I watched and waited for a while.  At the time of initial diagnosis, I had slight symptoms, such as intermittent tinnitus.  I have other medical issues and some of the symptoms seem to overlap, so I honestly can't tell you which occur from my AN and which occur from other medical issues.

But know this... you have time to reasearch so that if/when the time comes that you need to make decisions regarding treatment of the AN, you will be able to make the most well-informed decision for you and your situation that you can.

keep reading, ask questions, pull up a bar stool and place your order.  We can sing "Danny Boy" (ducks from Lorenzo!) but we have great shoulders and yes, good ears if you need one.

Hang in there...
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Battyp

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Re: small AN with symptoms
« Reply #8 on: January 30, 2007, 06:40:36 pm »
HI Cindy and Welcome.  Looks like everyone's beat me to any info so I'm just going to say hello!  ;)

cindysip

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Re: small AN with symptoms
« Reply #9 on: January 31, 2007, 08:39:28 am »
Karen, thanks for the links...I have found them to be very informative.

People I speak to telll me I sound so calm...I attribute that to all that I have read here... it is informational and supportive. I am also thankful that I have time to gather information, learn and ultimately make the right decision.

My greatest concern is my hearing. In addition to the hearing loss in my affected ear I also have hearing loss in my "good" ear. The ENT told me that I am young to show such a hearing loss as I have never been exposed to extremely loud noise. My youngest children are 8 & 10...I want to make sure I can hear them argue for many years to come.

Diagnosed 1/07 2mm AN - symptoms included spinning sensations when awakening, balance problems & mild hearing loss
6/07 - followup MRI no growth
6/08 - no growth, hearing unchanged

Jim Scott

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Re: small AN with symptoms
« Reply #10 on: February 06, 2007, 02:58:11 pm »
Cindy:

Welcome to our group.  However, I'm sorry about the rather high 'price of admission' (an acoustic neuroma tumor).  It appears as if you may well be a candidate for radiation treatment, which is non-invasive and should be considered. 

I don't have any fresh information to give you, beyond what has already been offered.  I will venture to say that, while an AN usually does involve at least some hearing loss, from minor to total, your hearing loss on your 'good' side (the side without the tumor) is problematic and needs further investigation by your ENT, as he no doubt will.

You already know this site is chock full of information you can use and the discussion forums are a great place to get personal feedback, suggestions and support from those of us who have 'been there'.  I expect you'll be a frequent visitor.  :)

I wish the very best as you begin your own AN 'journey'.


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.

jtd71465

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Re: small AN with symptoms
« Reply #11 on: February 06, 2007, 05:26:15 pm »
Cindy-

I had my AN removed by the team of Roland and Golfinos at NYU on January 10, 2007...if you have any questions please contact me directly at jdombrowski@comcast.net.

You will be fine.

Joe-
« Last Edit: February 06, 2007, 06:05:20 pm by jtd71465 »
Right side AN removed 1/10/07 @ NYU Medical Center
Dr's Roland and Golfinos

an0806

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Re: small AN with symptoms
« Reply #12 on: February 07, 2007, 11:53:14 am »
Hi Cindy,

I have a 4mm right IAC AN on the inferior vestibular nerve (discovered back in 8/2006). I had been a patient of the HEC which strongly recommenede microsurgery. After weeks of research and opinions found on the AN chat forums, and after carefully weighing the pros and cons of both micro-surgery and radiopsurgery, I finally decided on the CyberKnife (CK) route which was completed only about a week ago.

All I can say is take some time seriously consider ALL of your available options. If I remember correctly, one doc. told me that anything under 10mm is small. Both of us should feel fortunate that our AN is real small.

If you need more info on my AN, my CK treatment, and my pre- and post-CK symptoms, let me know.

an0806

pearchica

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Re: small AN with symptoms
« Reply #13 on: February 12, 2007, 08:27:37 pm »
Hey Cindy: welcome to the party! ::) When I was diagnosed, I was in the middle range that I needed to do something within 6 months. I did a lot of research. Do know that the field is biased towards surgery and that if you want a alternate ie: radiation you may have to go "outside the ENT" circle to get an alternative procedure.  Also make sure you are comfortable with your facility when you make the final desicion - which could be quite a while for you given the size.  I almost think little ones of more of a bugger than middle ones- I mean I had to make a decision so it forced me to deal with it- I'm not sure how I would have done with the wait and see procedure.

Take care, and do keep checking in with us- it helped me a great deal during the research process. Annie
Annie MMM MY Shwannoma (sung to the son My Sharona by the Knack-1979)
I have a TUMAH (Arnold Schwarzenegger accent) 2.4 x 2.2 x 1.9CM. CK Treatment 2/7-2/9/07, Stanford- Dr. Stephen Chang, Dr. Scott Soltys