Another newbie

[Steve114]

K:

I am new at this and just trying to make sense of it all. Your situation sounds very scary and you were very brave - happy all has turned out so well.  This site has many examples of successful outcomes. My initial understanding is that surgery or radiation is something you do when you have to do it. In a sense the surgery/radiation does not make you better (e.g. hearing loss will not return). However, you do it as necessary so situation does not get worse.

S

[LOIS]

 Welcome to the forum Dennis.  This is a great place for info and support.  Mine was 1.2 cm x 1.1 cm.  I would have preferred to have watched and waited but it didn't start in the normal place and was already pressing on the brainstem.  Because of that, surgery was the only option.  IMO the most important thing is finding a Dr. that you are comfortable with and trust.  You will know it when you do.  I literally ran out of the first dr. I talked to but the 2nd was completely different.  And he had a lot of confidence in himself.  I had the retosigmoid surgery.  It will be a year the 28th of this month.  I went for the 1 year (a little early) post-op mri Friday and see the dr. tomorrow morning.  He did get the whole tumor out so I'm not expecting any bad news.  I did have a meningitis complication after surgery which is the cause of the headaches I get now, although they are appearing less often.  I still have some dizziness and balance problems and memory which I had before the surgery.  But everybody is different and everybody's body reacts differently.  You definately have time, so dont rush into anything.  Make sure you are comfortable with the choice you do make.  That is the most important thing.  Everything will turn out ok.

Take care,
Lois

[CHD63]

Dennis .....

Welcome to our exclusive (unfortunately) group!  As the others have said, making the treatment decision is a very personal one.  There are many factors to consider:  exact location & size of your AN, your symptoms, speed of growth (usually very slow, but can be more rapid so tell your ENT of any new or rapidly progressing symptoms), your personal comfort level with leaving a tumor in your head, etc.

In my case my tumor size was borderline for radiation and it was both in and out of the auditory canal.  I had sudden hearing loss and increasing balance issues, leading up to the diagnosis.  My particular AN was of the rapidly growing variety (quite unusual) and I had no desire to keep the thing in my head.  Therefore, upon the recommendations of my ENT, a general surgeon friend, and the neurosurgeon, mine was surgically removed via retrosigmoid approach and I have absolutely no regrets.

As you have been doing, continue your research and talk with every medical person you know.  After this, listen to your inner self and go for whatever treatment seems best for you.  As many of us will say, the decision for type of treatment is one of the most stressful periods in the AN journey.  Whatever treatment you choose, go for the physicians or surgeons with the most documented successful experiences you can find ...... cannot stress that enough as it truly is essential for a good result.

My thoughts and prayers as you walk through these days of research and treatment decision.

Keep us posted on your journey.

Clarice

[DR]

Wow, I am completely blown away by all the responses!  This forum has been incredibly helpful.  The individual accounts and links provided have allowed me to get up to speed quickly on my options.

Thanks to all of you who have taken the time to share your thoughts and experiences.

[Debbi]

Hi DR-  Just wanted to welcome you.  you've gotten some great insights from my fellow ANers, not much I can add to what they have said.  I wasn't a candidate for radiation because of the placement; but I would have seriously considered it vs surgery if that had been an option.  Hard to say what I would have decided.  Both come  with their own set of risks/rewards.  It sounds like you have time on your side, which gives you a chance to research options.  Let us know how we can help, okay?

(Steve, see you in Chicago!)

Debbi

[Keeping Up]

Hi Dennis

Welcome - this is a great place to learn options.

As a different perspective, I am a watch n'waiter - 37 years old, mother of 4 kidlets (7,5,3,2), full time employed at a big investment bank, seemingly very part time mother right now.  I have been told to wait it out - and my doctors (ENT surgeon, radiation oncologist and neurosurgeon - obviously 3 different opinions) don't necessarily view it as delaying the inevitable.  [They have done research on watch n' wait ... and firmly believe I have a very good chance of getting to beyond 10 years without treatment.  But, alas, won't bore you if it isn't the right choice for you.  However, if you want the research I was provided PM your email to me and I will send them on.]  I am lucky the tumor is small and intracanicular, and causes no symptoms (save hearing loss, tinnitus, and intermittent balance issues).

I mentioned this on a different newbie's post earlier this week - I like to watch other people make decision, I learn a lot from their decisions and their outcomes.

Funny enough, I have a benign breast tumor (actually ... I hope, no firm diagnosis yet, next week) of about the EXACT same size as my AN - so I am on a double watch n'wait.  The race to see which one grows faster.  AS someone else mentioned, personality is a big part of the decision making process - I am a bit laid back and laissez-faire, it works for me.

Good luck.

Ann

[wendysig]

Dennis,

I'm just back from a short vacation and want to welcome you.  You've come to the right place for information and understanding.  AN is a difficult thing to wrap you head around (no pun intended) and having options for treatment choice can be confusing.  Ask any questions, vent laugh and cry, we are here for you.

Wendy

[suboo73]

Welcome DR & Steve 114!

As you have already discovered, this is a special place with a FANTASTIC group of folks who understand your situations.
I am W & W and wouldn't be here if it were not for my sister, diagnosed 6 months before me - bless her ENT who didn't drag things out, and got her the tests she needed.  So when i realized she was describing the very symptoms i had, i went to a major medical facility and asked for the MRI (w/contrast.)

We are here for you - to support and listen.
Ask any questions, do your research.  If you need a break, take a break from it all.
When you feel like it, send us an update.

Many thoughts and prayers on this AN journey.

Sincerely,
Sue

[mimoore]

Sorry for the highjack but Sue I am interested that you and your sister both had an AN. My brother is in Michigan and is currently being tested for something neurological, maybe an AN?
Is there anyone else out there who has siblings or children who have developed an AN as well as you??
Michelle 

[DR]

Ask any questions, do your research.  If you need a break, take a break from it all.
When you feel like it, send us an update.

Take a break... that is exactly what I did for the last few days.  As I'm sure all of you realize, the amount of information available online is staggering.  I have spent hours reading first-hand reports, abstracts, etc. and just needed a few days away from it all.  Golf, a Detroit Tigers game, an evening out with my wife and spending time with our kids... just what the forum ordered.

I have a consult scheduled at the Michigan Ear Institute later this month.  I called the House Ear Clinic (L.A.) on Friday and spoke with a nurse.  To my surprise I received a call from a H.E.C. doctor on Saturday morning.  It was around 10:45am EDT (7:45 Pacific)  Spoke with the doctor for 20-30 minutes.  I also plan on calling Stanford this week to discuss the CK option.

The ENT office provided me a copy of all my records.  The relevant info:  9mm X 9mm X 11mm; hearing loss is approx. 40db between 4000-8000hz; word recognition is 100% (I like that figure.)  ENG test showed an issue but I'm not sure how to translate that data.  I'm not having any serious balance issues, so that is another plus for me.

[Mickey]

Hi DR! I noticed that your looking at all your options. This is a good thing to do without rushing into things. I have an AN approx. the same as yours. Have been W+W for 2 years now awaiting my last MRI report and Dr. visit. Iv`e been going on "stable" so far and hoping for at least the same to W+W for another year. Alot of ways to deal with this depending on your own individual circumsatnces. Will post on W+W board, Best Wishes, Mickey

[suboo73]

Hi DR!  So glad to have an update from you and how you are progressing with your research. 
ALSO good to hear you took a break -- even with information from my sister, i had to go read it all for myself. 
[And of course, her journey is different from mine, though we can talk about ANs in general.]

Anyway, i have been reading, researching, etc. for about 10 months now.  Sometimes W & W is indeed nerve-wracking!
And i actually believe i know what treatment i would follow today if i had to choose, so that is a good thing.

I decided to wait for the official 1 year MRI to make any major decisions. 
Also, our health-care system woes are making me extremely nervous - now there is a factor i did NOT anticipate. 
So i may have to deal with the whole AN soon, just to get this behind me.

You sound like you are on track at this point.  Keep in touch, and go for the best!
Sincerely,
Sue

[leapyrtwins]

Hi and welcome, Dennis.

Tuning in a little late here - I was in San Diego for business then went to the ANA Symposium in Chicago.

Michigan Ear has a very good reputation - especially Dr. Kartush.  Also, Dr. Richard Wiet introduced me to a doc from University of Michigan at the symposium.  His name escapes me, but Dr. Wiet told me that U of MI is a "great place to have an AN treated".  Thought I'd pass that along.

Best,

Jan 

[sgerrard]

Also, Dr. Richard Wiet introduced me to a doc from University of Michigan at the symposium.

I bet it was Dr. Steven Telian. I sat next to him at one of the meals, and it sounded like they have a good program underway at U of M. I like the idea of doctors who have experience with ANs and are actively seeking to improve their procedures and outcomes. He was also on the diagnosis discussion panel. He is inclined to surgery, but that is good if you are looking for a surgeon.

Steve

[leapyrtwins]

Thanks, Steve.

I could have been Dr. Telian.  He's in one of the pictures someone posted from the symposium; specifically the one at the banquet with Catherine from Accuray in it.