Just diagnosed and need information

[Jeanlea]

I recently went to my ENT because I was experiencing hearing loss in one ear.  After verifying that I indeed did have hearing loss in one ear he sent me for an MRI.  I figured it was just another test to rule out other problems.  He didn't seem to make a big deal about it.  Today he called me with the results and told me that I had AN.  I hadn't even heard of it before.  I am trying to gather as much information as possible.  My doctor is scheduling me for an appointment with another doctor.  He told me that because I'm very healthy and still have quite a bit of hearing in my ear that they will probably want to surgically take it out. 
Thanks for any info.

[GM]

Jeanlea,

You have found the right source for information this is a great site with caring and informative people.  First, to clam you a bit...I know this is scary, but understand that this is a slow growing non-cancerous tumor.  If you had to have a tumor...this is the one to have.  They sometimes grow at a rate of 1 mm a year if it grows at all that year. 

A couple of things to find out are the overall size and location of your tumor as that will assist you greatly on deciding your treatment options, as well as helping others on this site to give you info.  You'll be sent to an ENT and have tests run on you to determine the amount of hearing, word recognition and balance lost in your AN ear next.  All of the tests are totally painless, so no need to worry there.

You have surgery, radiation, and monitor options at your disposal.  All of this depends on the size and any existing complications that your tumor is causing you (headaches, numb face, vertigo, trouble swallowing, etc).  If you lack all of these...your well ahead of the game and very lucky.  It seems the key is early discovery with few complications.

You'll also see that there is a wealth of info out there on the web...if you do a Google search you'll see about 124,000 hits.  There is a lot of repeated info out there, feel free to ask questions everyone here is caring and will help the best that they can.

Gary

[Jeanlea]

It is a bit calming to be able to ask questions of people who have experience with this.  My doctor said the tumor is 3.5 cm.  I don't know exactly where it is.  My biggest symptom is hearing loss in one ear.  I've been to the ENT doctor.  He's the one that sent me for the MRI.  I decided to go there after my regular doctor couldn't find anything cause for my hearing loss.  I do still have fairly good hearing in my affected ear.  The other ear was fine.  I also have very, very slight balance problems.  I didn't even think of it as a symptom until I began reading some of the other posts.  What are the chances that I will lose all hearing in that ear?  The doctor mentioned surgery and being able to save my hearing.  I'm also curious about how much time it takes for the surgery and the recovery period.  I teach kindergarteners so I don't want to have to be gone too long.  Will I have to get my head shaved and will my face look droopy?  Oh so many questions I have now.  Thanks for the support.     

[alibauer]

Hi Jeanlea,

I am in the exact same boat as you right now...only just over a week into this crazy thing. Get ready to be on an emotional rollercoaster, but know that it will be okay.

I know that your recovery time will be 4-6 weeks. This is a major surgery and that seems to be the general consensus from what I've read. Besides, you don't want to run back to teaching those little ones while you are unsteady on your feet!

Good luck in your research and stick to this forum! It has been a tremendous help to me.

Ali

[matti]

 Hi Jeaniea - first of alll welcome to the ANA forum, it is a wealth of information as well as inspiration. I am 7 years post-op, my tumor was 3.5 cm located on my left. My earliest symptom  was dizziness. My hearing in the affected ear was perfect, so my surgeon decided to operate via the middle fossa approach. This approach I was tod is the best at hearing preservation. My surgery took 7 1/2 hours because the tumor had severly splayed my facial nerve and my drs. were bound and determined to save it. Luckly they did, but were unable to save my hearing nerve. I was in ICU for 2 days, not dizzy at all, my brain had long been compensating for the loss I was experiencing all along. I must say the only real pain I had was from the darn head bandage that they wrapped so tightly. I was up and walking when I got to a regular room. My total stay in the hospital was 5 days. My recovery went well, my first week home I did need some help, but by the second week and third week I was feeling pretty comfortable being alone. Dizzy  and light headed at times, but I was so used to that before surgery.The tiredness is what really threw me, as I am normally very active/hyper. The only pain medication I was on at home was Tylenol/Codeine and that was only once a day if that. I think most drs. say to take 6 weeks off after surgery.

My head was only shaved at the surgery site. The rest of my hair covered it. My incision is in the shape of a question mark, from the top of my ear all the way around to the bottom. To this day, the left side of my head feels numb when I touch it. The most difficult and challengiing part to this day is the single sided deafness. I am hoping to get a BAHA soon.

Arm yourself with research and questions when you visit the surgeon and take someone along with you to help absorb and remember all the info the drs. discuss with you. You will be fine, I have said this before on the forum, but the first tihing my surgeons said to me was, "If you are going to have a brain tumor, THIS is the one you want to have".  From that moment on I felt lucky.  Please keep us posted and remember, we are all here for you.

Matti

[bonehead]

Hello Jeaniea,

I would like to offer you a bit of caution about the other posts ahead of mine.  Although the information they provided is valid for their specific cases, you should be VERY aware that each case is different in so many regards.  I can assure you (like the others), that you will be fine and will get through it, but please remain open to the ideal solution to your situation.  To this end, you will need to do a great deal of research.  It sounds as if you have not yet been forwarded to a specialist (e.g. Neurosurgeon or Neurotologist).  Your ENT should direct you to a local specialist of this sort.  A great deal will depend upon where you live or where you are prepared to travel for the best care, but start with your local choice.  There are resources within the ANA web site and the Yahoo ANA group to locate doctors who will review your MRI and propose a solution based upon your case.  You have probably seen by now that the most well known center for these sorts of tumors is the House Ear Institute in California.  As one of your consultations you should indeed get their opinion.  Given the size of your AN, I would wager they will recommend a Translab approach (you should also research the different approaches on this web site).  They (HEI) favor the use of Translab, and they are very good at them.  The down side with this approach is it does not provide any chance of saving remaining hearing.   Therefore, I would urge you to consult with a number of doctors and pick the situation you are most comfortable with.  After all the statistics, opinions, and comments it does seem to end up being a gut call on your part.  I wish you the best.

Jon

PS - If you're in the NY/NJ area send me a private message and I'll put you on to some good choices near by.

[Jeanlea]

Hi Jon,

Thank you for your advice.  My local ENT did recommend a doctor in Milwaukee for me to see.  I'm starting to learn the questions that I should ask when I meet him.  I'[m beginning to think that I may not end up with hearing in my left ear when this is over.  I know my local ENT mentioned something about trying to save my hearing though.  Does everyone experience balance problems after surgery?  I really don't have much of a balance problem now.  In fact the only symptom I has that sent me to the doctor in the first place was when I noticed I couldn't hear as well out of my left ear when I was on the phone.  I keep reading that you don't come out better than when you go in.  That is not very encouraging. 
I will keep researching and gathering more information.

Jean

[matti]

Absolutely each case is different. I never intended to imply that my AN experience would apply to each and every person affected. I was very specific in my post and always referred to everything as my. I am very sorry if it was taken any other way. 

[Jeanlea]

Matti,

I was not offended and am happy to gather information from anyone that will share it.  From what I've read everyone does have somewhat different expereinces.  It's good to hear from all people.  Does anyone have ideas on how long it takes from when you meet with your doctor until you have your surgery?  Is there any rush to get it done quickly?

Thanks,
Jean

[bonehead]

Yes, it is doubtful you will come out better hearing wise.  I thank skilled surgeons and a nice blood supply to my auditory nerve which made me damn lucky to retain my pre-surgery level.

On the balance - near term, it depends.  Longer term, you should be fine.  Let me 'splain.

If the AN has already damaged the balance nerve on the side of the tumor (somewhat likely given the size of yours), your body has had time to compensate for the loss of the balance nerve.  If this is true (did I say each case is different <grin>) your near term impact will not be quite as bad after surgery.  Mine had not been damaged, and when they took mine out I was quite wobbly after surgery.  I did walk the day after, but it was tough.  Balance does come back, or I should say your body learns to compensate as your recovery progresses.  A lot of walking helped me tremendously.

Where I notice the loss of balance nerve today is at night (when my other sensory systems can't compensate as fast) or when I make sudden movements - a bit of a whoa! moment.

I also like to challenge my balance system.  This past Winter I learned how to snowboard and just last week I tried surfing for the first time.

So there you go - it can be beat.

Jon

[bonehead]

Hi Matti -

I did not mean to say that you were implying that.  Mostly I just wanted Jeaniea to approach it openly.  I think we're all in agreement.

Jon

[matti]

Jon - Absolutely!!  Hey, Kudos on snowboarding and surfing.

Jeanlea - In my case I had 2 weeks between diagnosis and surgery. It so happened that way because my surgeon was going on vacation for a month and I just wanted to get it over with.

[Jeanlea]

My local ENT called today and said that he had scheduled an appointment for me with an ENT doctor in Milwaukee.  The appointment is tomorrow!!  Yikes!  I didn't expect it to be so soon.  At least I should know more about my options after tomorrow.  I picked up my MRI results and my records from my hearing test.  I could see the tumor, but I can't really tell where it is located.  Hope to find out more tomorrow.

Jean

[ljedwards]

Jeanlea:

I'm a little behind in reading posts so this information may be out of date when you read it.

One of the prior posts indicated House is the premier treatment facility, or somethng to that effect.  Let me amend that to say that House is probably the premier facility for surgery.  To be an informed patient, just remember that surgery is not the only treatment, you have a couple of other options - radiation and wait and watch.  And to get the best information on those options, check with a provider of each option.

Also check out www.andb.info/newbies/ for a message to newly diagnosed on a website established by patients.  As I've not been on the site in a while, I think it also has a list of questions to ask your doctor.  As another poster advised, take someone with you to listen and take notes.

Hope this is helpful.

Jeanne

[gemaste]

I am 10 post surgery, mine was done is St Louis.  Recovery is going very well, eachday is a step forward.  This whole experience is quite the story.  Hope I can help in the future.  Gemaste