Diagnosed yesterday

[Chelle]

Hi everyone...Yesterday my diagnosis went from Idiopathic Sudden Sensorineural hearing loss to AN.  I was stressed enough thinking I was going to have my first intratympanic steroid injection when my doc got the results of my MRI and found the tumor.  It's small 1mm now so we decided on the wait-and-see option.  I know everyone experiences this, but wow...the shock!   Three weeks ago I had a little sinus congestion and chalked up the clogged feeling in my ear to that. I had severe hearing loss at my first hearing test and yesterday showed improvement, which was so encouraging until we saw the MRI.  I'm 52, single, very healthy, active and in grad school working on a masters in social work (now that my youngest is in college)...I may be my first client! I'm seeing Dr. Ana Kim in NYC with the NY Ear Institute who says the surgery would be at NYU Langone, when and if I go that route.  Anyone have experience with of knowledge of either?

I've read many of the posts and look forward to hearing from you caring folks!
Thanks!


1mm right ear

[Larry]

Hi,

At 1mm, unless the an is causing balance issues, go into wait and watch mode. It is harmless in its own right as long as its not causing you any issues.

regrads


larry

[CHD63]

Hi Chelle and welcome to this forum .....

Just to make sure we are correct in our assumptions ...... is your AN 1 mm or 1 cm?  A 1 mm AN would be itty, bitty, tiny and barely discernible on an MRI.  So I am wondering if you meant 1 cm, which is still small .....

Whichever it is, you have time to do your homework and get several opinions.  You should have all three options available:  wait and watch, radiation, or surgery.  If you have not already done so, send for the ANA free materials to help you sort out your options.  See:  http://www.anausa.org/index.php/contact-us

I do not know about the medical facilities you mentioned, but others on here probably do.  One thing on which we all pretty much agree is this is one situation where you want the physician(s) with the most successful experience treating specifically acoustic neuromas.  This is a relatively rare tumor and is quite different than other brain tumors in treatment approaches.

Ask any specific questions you have and clear up the size for us.

Thoughts.

Clarice

[Chelle]

To be honest Clarice, I'm not clear whether the tumor is 1 cm or 1mm; I was kind of blindsided by the news and didn't exactly absorb it all perfectly!  It's one of the questions on my list to ask my doctor, but I'm thinking it's probably 1cm.
Thanks to you both for your input.  I will order the materials and am open to all avenues of information.

Thanks-
Michelle

[Mickey]

Hi Chelle! I`m glad to see you came to this ANA board for reference....At 1mm I doubt if an AN is detectable so I'm assuming it 1 cm. By the way 1cm is still concidered quite small. Just wanted to let you know that 5 years ago I was in the same boat as you. I was diagnosed with a 1cm AN on left side at 58 years old with symptoms of tinnitus with very minor hearing loss and migranes. Needless to say I was shocked also. Now what to do? Please take your time and gather information and also check out other doctor for second opinions. In  NYC you have some of the best in the world (I use Drs. Roland + Golfinos). My conclusions; I decided to Wait and Watch. After taking 6 month mri`s for a year, I`m up to yearly mri's for the last four and going for 2 year mri`s soon with my AN "stable". I also decided to get myself healthy as possible by exercise, supplements, diet, prayer. I feel better than I did when first diognosed, haven`t had a serious migrane in years with everything else stable and very manageable now 63years old. This is my path which seems to be working well for me, which was first guided by watching my mri`s for growth. If no growth my and my doctors opinion don`t ever intervine especially with symptoms being very manageable. Just giving you some kind of idea and letting you know that whatever your choices everything with today`s technology is going to be alright. Best wishes, Mickey P.S. If you need to talk I`ll send my tel. #)

[Mickey]

PSS Michelle if you can get to a AN meeting which also will be very helpfull. There is ANA New Jersey and ANA NYC at NYU medical center. Look for the dates in the future....

[Chelle]

Thanks for your message Mickey.  Based on what folks have said on these boards I'm planning to get a second opinion from Galifinos/Roland and maybe send my MRI to House for a consult. My symptoms aren't very bad now - severe hearing loss in my right ear and a few days of slight dizziness and ongoing tinnitis which I'm adjusting to.  The biggest thing is the fear of what could happen, but since I have no control over that I'll work on what I can control, like it sounds you did.  I have a regular meditation practice and now will really have to practice what I've been preaching to others about being present and mindful!  I would like your phone number and the contact information on the NY and NJ AN support groups.  Have you been to either?

The people here have already been a HUGE support and great information source...thanks to you all!

Michelle

[leapyrtwins]

Docs to see near NYC.

Definitely Roland & Golfinos.

Selesnick is also a name I've heard a lot.  There are many more in that area - I'm sure I've missed several - so search the Forum.

Had a long conversation with my neurotologist recently.  Watch and wait is being recommended more and more these days in the U.S.; it's the norm in Europe where they think American docs are "crazy" for treating ANs with surgery and/or radiation.  Definitely depends on the individual case - size, location, symptoms, etc., - but if your AN is small, W&W is a great option.

Jan

[Mickey]

Hi Michelle... I sent the info over to you, Mickey

[Tumbleweed]

Hi, Chelle:

You might find the following threads helpful:
http://anausa.org/smf/index.php?topic=6657.0
http://anausa.org/smf/index.php?topic=6670.0

Look for my posts partway down each page for information comparing different treatment options and related info.

Also see http://anausa.org/smf/index.php?topic=5783.0. This shows a list of questions you should ask your consulting doctors. Consider it a starting point for making your own list.

By all means, get at least two opinions before you make a decision! I consulted six different doctors before deciding on what type of treatment I wanted to have and which doctor and medical facility to use.

Even if your tumor is 1 cm (which I suspect it probably is, as a 1mm tumor very possibly wouldn't even show up on an MRI), watchful waiting is still a very good option for you. At the very least, you should wait six months and then get another MRI to see if the tumor is growing; it might not be. I have a small hypoglossal brain tumor (in addition to my AN that has been treated), but I haven't had it treated because it hasn't grown at all over the last four years. Some ANs remain stable in size for 20 years or more, although that's rare.

Best wishes,
TW

[Chelle]

Thanks TW, I'll definitely check out the threads and other info you sent.  And I agree about getting multiple opinions; the more input the better.  You're right, my tumor is 1cm, not mm, I was so blindsided when my doc explained  the MRI result that not all the information got absorbed correctly!

Thanks and best wishes to you,
Michelle

[Susan A]

Michelle,
your AN (and how you found out about it) sounds very much like mine. Mine's a little smaller, but I too have hearing loss that improved somewhat from the first hearing test to the next, some tinnitus and occasional dizziness. I've seen 4 different docs - 2 neurotologists, 1 neurosurgeon, and an NF2 specialist. ALL agreed that watch and wait is the way to go right now. It was very reassuring to hear them all say the same thing - so definitely get those second (and third or fourth!) opinions!

Susan

[JAndrews]

Roland has an excellent reputation and was as highly recommended as Dr. Brackmann at House was.

[Chelle]

I have an appointment with Dr. Galfinos in a couple weeks.  I know it's not an emergency at this point, but wanted to get more input  from a top doc before the holidays and, hopefullly, put it on the back burner for a while and focus on grad school finals and Christmas.   They know about my hearing loss, but I haven't told my kids (19 and 24) yet about the tumor.  My son is away at college and my daughter lives with her dad, who suffered a massive stroke last year.  He's doing well, but I hate having to tell them that their super healthy mom, the one they "never" had to worry about health-wise, has a brain tumor! I figured I'd wait until they were both home before Christmas to tell them together...not the best Christmas present, but hopefully still wait and watch after seeing Dr. Galfinos. I feel like all the hardships I've gone through in my life and the attending life lessons have prepared me for this one; my daughter said about the hearing loss, " Mom, if anyone can handle this it's you." 

Anyone have thoughts about consulting with radiation oncologists as well as surgeons?  Someone posted about surgeons being biased towards surgery and maybe not giving radiation its due in terms of treatment options.

Thanks all for your comments and support!
Michelle

[Mickey]

Hi Chelle! When you see Dr. Golfinos he will inform you on all options. NYU Medical Center has a NEW state of the arts Gamma knife machine. He has an unbiased approach on everything and I do believe after checking out everything the decision will have alot to do with what you want. Right now I`m sure you have at least up to your next MRI to get all the imput you need. When I was first dionosed my hearing had dropped a bit with clog sensation which Dr. Roland gave me a round of steroids . It`s about 5 years now with everything good W+W never looking back. Best wishes, Mickey