Author Topic: Just dx. with ana  (Read 6096 times)

cindy

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Just dx. with ana
« on: November 22, 2006, 04:58:51 am »
Hello everyone,

Have just been told I have ana, going for my MRI with contrast in two weeks. They found it by doing a hearing test and since I had some hearing lost in my right ear thought a ct scan would help,well during the ct scan I freaked because of the noise so when they ask me for more pics with contrast I just simply said no way. I went back for the resuts of the CT scan and they told me that I had ana which is 4mm. Since they didn't get a good pic with the ct scan would I be willing to have a MRI which I agreed to, thats when I started reading up on this condition. I am a register nurse and had no clue. When someone mentions tumor you just think oh my god I have a tumor inside my head. :o So of course started reading about it on the internet and thats the reason I came up on this site. I now live in Ireland and have for the last past 5 years. Which I think makes it more scarey because I am more familar with america medical system. I don't have any symptoms as of yet and I am very grateful they did find it at a early stage. I am so glad that I found this site to help give me information from people that are going through the same thing. Looking forward to hearing from any body. Seems like I have three options to deicide. Does anybody have any figures on how fast their tumor grew. I keep reading that its a slow growing tumor, but how slow as far as figures? Thanks for reading my post rambling  ;D

Cindy

Kilroy1976

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Re: Just dx. with ana
« Reply #1 on: November 22, 2006, 06:20:53 am »
Welcome Cindy. While there are exceptions to the rule, the typical growth rate of an AN is in the 1--2mm/year range. You are very fortunate to have discovered yours when it was "only" 4mm in size, and there should be no reason that you won't have a successful outcome from whatever course of treatment you decide upon. Everyone here will go out of their way to answer your questions and concerns, so don't be afraid to ask.

(Prepare yourself for some very loud noises from the MRI.) ;)
1.8cm AN
Linac
December 13, 2005
Shands Hospital--University of Florida

Obita

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Re: Just dx. with ana
« Reply #2 on: November 22, 2006, 06:37:25 am »
Hi Cindy:

I know you don't think so right now, but a small AN is a blessing.  You will probably be able to watch it for a while to see if it grows.  I do hope this is the case.  It will give you time to research your treatment when/if it starts to grow.

I had a MRI 20 years ago for a shoulder injury and I asked for drugs as I was sure I would freak out.  My Dr. ordered valium and I couldn't have cared less what they did to me.  Just a thought because it does take about 45 min. for the whole test.

Best of luck to you and please come back and let us know what the MRI shows.

Kathy O'Brien

ps:  I have cousins in Ballinrobe,Co. Mayo
Kathy - Age 54
2.5 cm translab May '04
University of Minnesota - Minneapolis
Dr. Sam Levine - Dr. Stephen Haines

nancyann

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Re: Just dx. with ana
« Reply #3 on: November 22, 2006, 07:21:01 am »
Hi Cindy - Yep, thank your 'lucky stars' it was picked up early.   TAKE YOUR TIME with your choice of treatment:  watch & wait, radiosurg. or microsurg.    Time is on your side at this point.

My thoughts are with you, Nancy
2.2cm length x 1.7cm width x 1.3cm  depth
retrosigmoid 6/19/06
Gold weight 7/19/06, removed 3/07
lateral tarsel strip X3
T3 procedure 11/20/07
1.6 Gm platinum weight 7/10/08
lateral canthal sling 11/14/08
Jones tube insert right inner eye 2/27/09
right facial paralysis
good to go.

cindy

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Re: Just dx. with an
« Reply #4 on: November 22, 2006, 08:18:09 am »
Thanks for the replies, I have a another question. OH NOOOOOOOOOOO LOL Wouldn't it be better to take care of it at a early stage rather than the wait and see. I am not getting any younger and afraid at 70 it gets to where I will have no choice. I know I have time to decide but my way of thinking sometimes seems to be the quicker you get it taken care of the better. Maybe not in this case. What do you think? It really does help with just the few replies that I have received so far,ease my mind. Thanks so much.

PS I live in County Tipperary, in a small village called Bansha

Cheers
Cindy

Cheryl R

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Re: Just dx. with ana
« Reply #5 on: November 22, 2006, 08:39:35 am »
  It is not always better to treat AN's when real small as you may never get any more symptoms with it or much growth.    It is scary to know you have this thing in your head.     If you would have surgery then you may end up with hearing loss,balance problems and even possibily facial nerve problems.    Some of the outcomes depends on tumor location and surgeron skill.      If one has a small AN then the body has possibly not compensated for the tumor impacting the balance nerve.         Over time the balance nerve on the good side will adjust and take over for the AN side but it takes time to do this.    You may end quite dizzy or off balance post op for a short to a long time.             Then again you may have few problems so it can be real hard to know what to do.
Others can speak for having some type of radiation treatment as I was a surgery pt.   
Part of the watching and waiting is paying attention to what symptoms you feel over time.
                    Good luck!                           Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

krbonner

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Re: Just dx. with ana
« Reply #6 on: November 22, 2006, 09:53:31 am »
Hi, Cindy!

The choice about treatment is a very personal one.  There are a lot of people who opt to "watch-and-wait" with small, asymptomatic ANs.  The problem with treatments (radiation or surgery) is that they can sometimes create problems that weren't there before.  When I was first diagnosed, I was very happy to be a watch-and-wait patient, and my AN was 1.5cm at the time.  But my only symptom was almost complete hearing loss on that side, and treatment wouldn't do anything to bring that back.  Unfortunately, I had a rare fast-growing AN - after a year, my AN was 2.3cm (using the same MRI machine, being read by the same doctors) and pressing on my brainstem.  So I had to take action.  (The pathology report confirmed an unusual quality to the schwann cells and they were dividing quickly, but it was definitely an AN.)

If you can, find a doctor (ENT or neurologist) who specialized in ANs - an experienced doctor will have treated hundreds of patients.  You are not in a big rush - take your time and make a decision that you're comfortable with.  Even if you decide to wait, you'll still be getting frequent MRIs (my doctor wanted them every 6 months) to monitor the AN.  If something changes, you'll have the information to make a decision at that point.

After you have your MRI w/ contrast, get copies of the films.  You can then send those to other doctors who will do free phone consultations.  The House Clinic in LA is well known for this (and I assume they talk with international patients).

Keep us updated!

Katie
diagnosed June 2005
2.3cmx1.6cmx1.4cm left AN
translab Sept 13, 2006; Drs. McKenna and Barker in MA (MEEI/MGH)

Derek

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Re: Just dx. with ana
« Reply #7 on: November 22, 2006, 09:56:26 am »
Hi Cindy...

I agree with the observations of Cheryl and Katie.... your diagnosed AN is relatively small and with the proviso that your neuro consultant is in agreement and that you have regular MRI scans, there is no reason why you should not initially select the 'wait and watch' mode whilst you conduct your own in-depth research on available future treatment options that are best suited to you.

 Be aware that any form of subsequent treatment (if required) has elements of side-effect risks attached albeit the risks are obviously greater with microsurgery than with radiosurgery. You will see from my' signature' details that I have been subject to 'wait and watch' for almost 5 years and my AN is 2cm.You should also be aware that whether you eventually choose to have radiosurgery or microsurgery, there are no guarantees that re-growth of the AN will not occur althougth that risk is relatively small. My personal view is why take unnecessary risks if 'wait and watch' is a viable option for you?

 Every day, post diagnosis, that you can retain a good quality of life with no risks attached is precious and must be an avenue worthy of consideration!

Best of luck in the future with whatever decision you make and remember, we are always available to offer advice and assistance at any time.

Regards

Derek
« Last Edit: November 22, 2006, 09:58:44 am by Derek »
Residing UK. In 'watch & wait' since diagnosis in March 2002 with right side AN. Initially sized at 2.5cm and now self reduced to 1.3cm.
All symptoms have abated except impaired hearing on affected side which is not a problem for me.

Jim Scott

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Re: Just dx. with ana
« Reply #8 on: November 22, 2006, 03:32:01 pm »
Hi there, Cindy;

I cannot really add much to all the sage advice that preceded this post except that you must not allow panic to cloud your decision regarding how to approach your AN diagnosis.  Apparently, you have an Acoustic Neuroma.  It's natural to hope that it won't grow but it certainly won't disappear, either and even a healthy diet, exercise and positive thinking, while of some overall benefit, are not a viable 'treatment', as you must realize, being a nurse. 

I'm not a physician but I believe that 'Watch-and-Wait' may well be a logical course at this stage, with the emphasis on the 'watch' part.  That means annual (or even semi-annual) MRI scans and being acutely aware of any notable deterioration in your equilibrium, hearing, taste, facial mobility, etc - as these can all be negatively affected by a growing Acoustic Neuroma tumor.  Considering the relatively small size of your AN, you can 'watch-and wait' and even opt for non-invasive radiosurgery (radiation) if and when your doctors say (and you agree) that the tumor simply has to be addressed.       

I like to remind newly diagnosed AN posters that the main things to remember are that this is a benign tumor and it'ss operable[/u].  It will be a hassle to deal with in some respects but it's a fairly manageable medical condition and not 'the end of the world', although it may alter yours a bit, as it often does.    Be of good cheer - you are among friends here.  :)


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.

Joef

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Re: Just dx. with ana
« Reply #9 on: November 22, 2006, 03:36:30 pm »

I call it my "speed" bump on the road of life ... I had to slow down and see the view of what really counts .. ;)
4 cm AN/w BAHA Surgery @House Ear Clinic 08/09/05
Dr. Brackmann, Dr. Hitselberger, Dr. Stefan and Dr. Joni Doherty
1.7 Gram Gold Eye weight surgery on 6/8/07 Milford,CT Hospital

 


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