Newly diagnosed

[gregorywannabe]

Hi everyone

Was just diagnosed with AN this week. I quick google and here I am! Seems like a great forum. I have been looking around and have learnt a lot already but still
have a few questions.

First a bit of background. I'm male, 44 and generally fit and healthy. I live in Perth, Western Australia.

My AN is quite small 4x4x5mm. Only real sympton is hearing loss in the left ear. Other possible symptons go back
to 1995 when I had a CT scan after being investigated for dizzy/blackout attacks. These originally happened when jogging so i put it down to running too hard but then
had the exact same attack when driving to work. A few seconds before the main spell I can sense it coming, almost a deja vu feeling and dreamlike, disconnected from
reality feeling. CT scan showed nothing. Still occasionally have one, maybe only once per year for the past few years and less severe. Maybe nothing to do with AN?
Next thing was a CT scan in 1999 because of tinnitus in the left ear. Nothing showed up. Both consults with a GP. Then 6 months ago got a referral from GP to an ENT
because of the hearing loss that had been getting gradually worse over the past 2 years. Finally got in and had an MRI a fortnight ago and the ENT called me in this week
to let me know. He's recommended just monitoring it for now and I will have another MRI in 12 months.

Is there any point in having it surgically removed now while fit and healthy? Rather than if/when it grows larger and needs to be removed at some later stage?
For that matter, how fast do ANs grow, or is it quite different for different people? I guess I'm thinking of a scenario where in 20 years time it must come out but
I'll be 64 by then and perhaps not as good a surgical prospect? Or is there no way it will grow that slow?

Anyway just a few things I was thinking. I'll be keeping tabs on this site as it seems a great resource. I'll keep googling for more info. And I'll check out any local
Oz or West Oz support groups. It will be years I imagine before any surgery but it's still good to hear of everyone elses experiences here.

Cheers

Greg

[russ]

Greg
  There's another Oz person on this forum if you can find her. Name is Vera. She may have hospital information.
  In general ANs are very slow growing at about 1 mm. per year but sometimes they do not grow. You are getting a little older so the tendency for growth is reduced.
  If surgery were necessary, 64 would not be too old if your health is well. I wouldn't have surgery w/o symptoms. Treatment often causes the most damage.
  Take care...
  Russ

[gregorywannabe]

Thanks Russ.

The more I read about post-op problems and stats of people suffering problems the more I keep thinking "just wait and see".

This is certainly what I'll be doing for the next 12 months. At the moment the "balance problems" issue is the one that concerns me most.

I already suffer acute motion sickness (and have since the day I was born). Anything that moves will make me nauseus and vomit, apart from
when I drive myself. When travelling by air or out fishing in a boat, etc. I just taken tablets and I'm fine. However, having suffered motion sickness
I would dread the notion of living with something like this 24/7. My understanding of the radiotherapy/surgery options is that there is a chance of
keeping the "balance organ" intact with everything except translab. Is this correct?

Anyway, still researching and finding links to OZ. Have found some already, still looking.

[gemaste]

I"ve been newly diapnoseed with a small AN. 
We live in St. Louis and are very worried
Doctors are runnung a lot of tests. 
Our decesion will need to be make soon. 
Biggest problem is balance

Liooking for answers?

[Karen H]

If your AN is small you probably do not need to be in a hurry to make any decisions.   Slow down, do your research.  There is tons of info on the internet that you can coordinate with the info your doctors give you.  Don't jump into anything to quickly!

Best of luck,
Karen

[ljedwards]

As a previous poster said, your AN is small so you have time to research. 

There is a St. Louis area support group if you are interested in talking face to face with patients, both pre and post treatment.  Go the the ANA home page and there should be a link to area support groups.

The current ANA president, Agnes Garino, is from Kirkwood and has a short article in the current ANA notes.

Jeanne
GK 1998
Missouri

[gregorywannabe]

Well, I'm baaaack. Just had the 12 month follow up MRI and referral to another ENT who taught my original ENT and has dealt with hundreds of ANs.

Good news is that the AN hasn't grown, still a small 4mm bugger. Bad news is that my hearing is even worse, with the latest tests showing not much servicable hearing. I could tell this just from everyday experiences anyway. He mentioned that it was unusual for such a small AN to cause so much hearing loss and said that it may well be a cochlear neuroma. Semantics to some extent as I don't think it affects the solutions in the future. He was quite willing to discuss both surgery and radiation as options, and said that there was NO advantage to performing surgery now when it was small over waiting until it was up to 1cm in size at which stage it starts creeping out of the IAC. He said that he would go trabslab if I chose surgery as my hearing was pretty well buggered anyway.

We're going for the wait and see again, and will have another MRI in 12 months to see how things are progressing. I'm still not super keen on surgery and will ask for a referral to a radiation oncologist next time I think just to see what they have to say.

Chances are small but just in case there's another West Aussie out there his name is Stuart Miller. Not an advert but when googling him I discovered he is a keen photographer with a website and some really godd stuff, particularly from the Antartic (http://www.stuartmiller.com.au/).

I keep dropping in to the forum for a look see so good luck to everyone and thanks for all the info.

Cheers

Greg

[tony]

Let me guess here - your`e Austrailian ? - no worries !
Anyway the pro`s and con`s of surgery/treatment  now, or later, are
almost a medical degree in their own right
All I would say is - it may take years to grow to 1cm or more
There maybe big changes coming in youre life
- but you may have some control over exactly WHEN they happen.
You maybe off work for a while - in recovery for a while
It depends on your life situation/circumstances if now is a good time
or waiting a year or two makes more sense
You can make plans, get fit, pay off the debts, in the meantime,
only you can really decide on that one.
Finally, generally, the younger you are the easier/quicker you adapt/recover etc.

Oh and you guys did quite well in the World Cup !

Best Regards
Tony (Pommie)
PS You see, we do forgive and forget !

[Pablo]

One of the major advantages of "watch and see" is to be able to consider future treatment opportunities. Some of the treatments for AN are in current followup, reaserch and development so the more the data is available, and the more the treatment is optimized, the better are the chances to minimize treatment side effects, and that also includes surgery. I would strongly consider that. I wish I could but my little baby is already 3.3 cm...

[gregorywannabe]

G'day Tony and Pablo, thanks for your thoughts.

Yep, it's not just a medical decision. Other things come into consideration. I have a boy and girl, 17 and 15 and it would be good if they are "out of the way" before opting for something like surgery. What I mean is finished high school and exams and into the next stage of their life. One less thing for them to worry about for the next couple of years. I also take the point about recovery being better when you're younger fitter. I'm pretty confident that won't be a problem as I'm pretty fit and intend to stay that way. I still play Aussie Rules footy (much to my wife's complaining!) and mostly manage to keep up with the guys 20 years younger. The embarrasing bit is playing with the sons of friends I used to play with years ago! Also do lots of running/swimming/golf. As you mentioned there are also advances in this area so maybe in a few years there will be other options? At the very least the surgeon will have done many more AN operations in the meantime!

And as for the World Cup, we wuz robbed!

Cheers

Greg

[AN?]

Hi Greg:
I have been diagnosed of an AN (very similar in size as yours 5mm) a month ago. I went through the same dilemmas as you are going through now. All my doctors were of the opinion to wait and watch. My only problem is tinnitus. AN was discovered by accident. I have perfect hearing now.  So the doctors have the opinion that by waiting the only thing I might loose is hearing, which in anycase can be a very possible side effect if I go for surgery.

As for balance, I am also an acute motion sickness person since I was born. However, because of my job I travel a lot and I still don't know how I manage them while continuously hating flying!!
 My balance sometimes tips me off when I am very tired (which I am most often as I have the bad habbit of pushing myself). But, don;t worry very rarely we are in a place where we have nothing to hold, if required. If the balance cripples you then ofcourse there will be no choice left other than surgery.

I am 37yrs and I also had the same questions if not now then when to have surgery. I guess, that's future and my doctors gave me lot of confidence by saying go and do what you have to do as long as you can. Worry about it when it comes. My next MRI is after 6 months.

So I have convienced my self that  I have at least another year of quality life and I should not let it go!!! So I am definitely enjoying the World CUP, having least amount of sleep, working hard for my career (my doctor dosn't believe that surgery will effect my career drastically, even if I become deaf and asked me not to think about it!!) and enjoying late nights!!!

cheers,
Anamika

[Boppie]

Greg,  I have led a health conscious lifestyle...kept up with routines and checkups.  I've had motion sickness issues for most of my adult life.  I developed tinnitis and hearing problems about 8 to ten years ago.  (I swear I could hear buzzing in my head when I was a child)  We discovered my 2cm AN in October, 2005.  I had surgery 10 days before my 64th birthday, 2005.

I am in fine health, and came through translab surgery well.  There was nothing unusual about my recovery.  I have a few remaining issues to adjust to since the surgery, but these are not life altering.  At 2cm the tumor had taken most of my balance and 65% of my hearing anyway. 

My opinion?  44 is a great time to enjoy life.  Enjoy your kids, today.  When you are 64, they will be there to help you through the wobblies. 

And remember BAHA is improving every year...something good to look forward to.

[Boppie]

Greg,  One question.  Even though you have "not much serviceable hearing", can you still tell where sounds are coming from? 

If you can still identify sounds by direction, the hearing is still serving you a bit.  My test results that were labled "not serviceable" referred to word recognition (mainly beginning and end consonants).  But at 35% hearing I was getting plenty of input for direction.  Unless you have other symptoms that are compounding the need for treatment, you can still enjoy that ear, and your hearing loss is not as profound as "deaf", (as in post translab).

[targa72e]

I am just past one year watch and wait for a small AN. I found it after sudden hearing loss 80db loss 64% SRT. Over the last year my hearing has gotten much better (up to 50db loss and 88% srt) but some of my other symptoms have gotten worse. I started having mild balance problems 5 months ago. My one year MRI showed “no significant change�.
My balance problems are visible in some of the VOR tests. For now I plan to continue to watch and wait but when to treat is less clear. My original thought was to wait until I showed growth and then start planning, I figured my hearing was pretty shot what did I have to lose by waiting . Now that my hearing has gotten better I am starting to wonder if I should do something sooner to save my hearing, knowing that any treatment has a 30% chance of taking my hearing. No easy choices.


john

[Boppie]

To those of you considering treatment.  Tinnitis usually stays with you .  I still have tinnitis post op.  Now I have the tinnitis hummmm in the background (which is the constant I've lived with for 10 years) and an additional hisssss at the end of most sounds (a result of the one sided hearing).  I have heard others report they have a hiss coming from their deaf ear.  But I believe what we are hearing is in the good ear...There again pointing to the problem of identifying where sound is coming from with SSD.

I have a happy, full life.  I just get tired easily in a room full of noise, talkers, noise makers.   I can't descriminate any more.   
If patients who have had GK, Novalis, etcetera could report the benefit of loosing the tinnitus...?  Now that would be something.

What I still miss most in the old me is hearing directionally.  Maybe Entific (BAHA developers) will come up with an answer.