I just found out too. :-(

[Kabe]

Well I did some further research. Compared my MRI to example found on UC Hospital (Mayfield Clinic) Brain Tumor website.  Sure looks like AN. I looked at the MRI a little closer and I had my side mixed up. It's def. the right side. I see something on the left side (much smaller). Not sure if that's anything to worry about but I'm sure the doc will tell me.  I tried to interpolate the size based on the zoom level and it looks to be @ 2 cm x 1.2 cm.  I've already been researching surgeons.  Just wondering what advice you were given as far as size and options.  I'm wondering if they could try to "zap" it first to shrink then remove if necessary.  I'm a little glum about the possibility of SSD (just figured that acronym out) but my right "ear sucks" anyway so it prob won't be all that different. 

It's starting to sink in that I very likely will need brain surgery. I'm sure all of you know where I'm at currently.  I keep telling myself, however, that if I have to have a "brain" tumor, this is probably the best one to have.

K.

[leapyrtwins]

You are right, someone is always on the job; often it is Jan. 

Steve

Actually I've been slipping a little in the past weeks, but now that my house is finally clean and my Christmas shopping is done, I'm back 

Kabe -

what you see on the left side of your MRI may actually be what's in the right side of your head.  MRI results are often confusing and you may be looking at the images backwards - or should I say opposite - so that left is in realty right.  Regardless, it might be best to wait for an official diagnosis from your doctor before we all assume you have an AN.

If you do have an AN, life as you know it might change, but life will go on - and odds are it will be good    We like to talk about a "new normal" post treatment here, which basically means we are all normal, but not necessarily the same normal as we once were.  For example, my new normal involves being SSD and it also involves having a BAHA (bone anchored hearing aid) which helps me with my SSD.

As you say, an AN is generally a lot better brain tumor than most, but it's scary and frightening nonetheless.  If you should receive a postive diagnosis, I encourage you to contact the ANA and ask them to send you their informational brochures - they explain a lot and in terms that are easy to understand.

You mention surgery, but that isn't always a given.  Depending on the size and location of an AN, radiation (zapping) or watching and waiting may also be options.   My AN was 1.5 cm and on the 7th & 8th cranial nerves when I was diagnosed and I was given the choice of surgery or radiation.  I was also told I could watch and wait, but not for an extended period of time. 

Recovery and long-term side effects vary widely from patient to patient - same goes for post treatment symptoms.  Most side-effects improve in time, but some like SSD don't.  I hate to sound so wishy-washy, but every AN journey is different. 

Mayo and Cleveland Clinic both have good docs who treat ANs;  but if you don't find a doc at either place that you like, and if you're inclined to travel to the Chicago area, I have a wonderful neurotologist who does both surgery and GK (gamma knife radiation).

Jan

[calimama]

My MRI showed a big white blob on the right side of the screen, but AN on the left. I assume this is just the way the pictures get taken and put onto disk.

Many here have kicked themselves at not having these things diagnosed sooner... many of us complained of tell-tale AN symptoms for years, but were still not given the right tests. Hope you find peace on this, as there is no turning back the clock, no 'coulda shoulda woulda'. At least it is now, and not another 7 years down the road.

Talk to a few different doctors, research well your options...  eventually you will land in a place where you can make a decision. Knowledge is power and at least there is time to ask questions and get the answers you need.

Good luck and keep on postin'

Trish in Toronto Canada

[Kabe]

Thanks Trish.  I finally realized that the MRI reverses the image (so what you see on the left is actually on the right).  I also figured out how to use the viewing software. Bottom line is I didn't know what I was looking at. Like I said I compared it to one I found on the UC website and it looked very similar. However, my ENT called Mon. to tell my that I DO NOT have an AN.  I asked him 3 or 4 times if he was sure describing the comparisons I saw etc...  He assured me that I don't have and AN and that I just have "an ear that sucks".  He's been doing this for a long time so I trust him.  But there is something inside me that's still not sure. Could the scan reports have been mixed up?  So I'm going to go in and see him to talk about it and hearing aid options.  I must admit it's a relief that I don't have an AN, especially with all I've read about it here. But now I really have no answers other than I'm losing my hearing in my right ear.  It's amazing how much I've learned about this in 5 days!

Thanks again and best of luck to you.

Mike.

[jcc1138]

Jenna Dawn and Kabe:
Good luck to all of you as well. I am in your club now. I found out on Tuesday of this week that I have a AN as well. I had a hearing loss about 2 years ago with tinnitus (the wonderful sound of crickets 24/7) and found that my right ear had gone from 40% loss in the high frequency range to 80 to 90% about 2 months ago. I went in for the MRI and was told of the AN. I will be seeing Dr Rigamonti at Johns Hopkins in two weeks and Dr. Walter Jean at Georgetown at the end of the year as well. I have to say that this forum was a GREAT resource to find the doctors who know about this condition. I am a little concerned as well about my options, but have decided not to worry until I have been told my options. I will try to let the forums know about the two doctors. I will keep you all in my prayers.