Diagnosed in August - lots of great info here helping guide my decision!

[minerva1221]

Hello everyone,
I was diagnosed with a small AN in August of this year.  I have been reading all of the information on the ANA site as well as lots of posts on this forum and, while often scary, I definitely appreciate the wealth of information and insight I've gained from here and thought I should introduce myself and share my story thus far!


Last summer, I noticed I was not hearing as well out of my left ear (primarily high-pitched sounds...like my alarm clock!).  I made the mistake of ignoring it initially, thinking it was just part of getting "older" (I am 39).  After a few months, I started having episodes of vertigo that would last for several days and then (mostly) go away.  That was enough to finally make me see a doctor.  My primary care physician noticed I had a lot of wax buildup in that ear and referred me to an ENT to get checked out.  I saw that ENT in December and he simply cleaned out my ear and sent me on my way.


When the vertigo continued after that and I started noticing constant tinnitus as well as a feeling of fullness in that ear, I knew I needed to find a different ENT.  Life got in the way and it was July before I finally did.  The appointment was night and day from the one I had in December.  This doctor did a hearing test (which confirmed high-frequency hearing loss) and sent me for VNG test and an MRI to figure out what was going on.


On August 15, I got my answer.....a small AN in the IAC.   After the initial panic and completely freaking out for a few days, I stumbled onto the ANA site and began educating myself as much as I could while waiting to get appointments scheduled with the neurotologist and neurosurgeon my ENT referred.


Now I have seen those doctors and 2 others that I self-referred to at UT Southwestern, their collective opinions seem to point towards either watch & wait or middle fossa surgery.  The also offered radiation, but neither pair seemed to feel that was as good of an option for me.  While the idea of surgery scares the poop out of me, waiting seems pretty scary, too.  I know they say these are slow-growing tumors and average around 1 mm/year (and sometimes not at all in older patients....but they never define "older"!), but I've seen/read quite a few examples here and elsewhere of people who had far more growth than that in 6 months to a year. 


It also seems that unless it does not grow AT ALL, at some point, I will have to do something....so my thoughts are leaning towards why not do it now while the tumor is smaller, hopefully the surgery is less complicated, and there is a chance at preserving my hearing.  I saw a comment from another poster in one of the threads I was reading this weekend (my apologies, I don't remember who or which thread!) and it said something similar....which really resonated with me and made me feel a little better about the way I was leaning.


I haven't finalized a decision just yet, but feel I am getting close and wanted to say thank you to everyone here for sharing your stories and experiences...both the positive and negative!

[ANGuy]

I'm 47 and was just diagnosed with a 1cm AN this June.  In some ways, we are similar in that for the time being we are WW while we figure out what to do.  First of all, and this is not a medical fact, or even opinion (it is a Fred fact, I'm simply declaring it as fact ), the waiting will get easier.  After three months and several consults with various saw-bones, I am much more laid-back about all of this. 

Second, the answer to which way is the best way to go is "yes".  You're young, it's small, treatment shouldn't be a big deal, get it over with.  Conversely, you're young, it is small, treatment won't be a big deal in 10 years, what's the rush?  They are both correct, legitimate plans.  For me, I am waiting, one MRI at a time.  I've had one.  In December, I get my second.  At some point, most likely, I will have to pull the trigger and get surgery.  If it's 10 years from now, I'll be 57 and that won't be too old for surgery.  In 10 years, they may have a magic wand to fix these things.  Who knows? 

Some things to consider, and not meant to scare you, at 37, if you had surgery and lost some aspect of your quality of life, would you have rather waited another 10 years?  Would you rather be 47 with a permanent condition or 37?

At any rate, you are in a good spot finding it when it is small.  Many people don't find out until they have a very big one that needs to come out NOW!  WW isn't an option for them.  You are not loosing any opportunities while waiting a few weeks, or months or even a year while you figure out what you want to do..  Just remember, it's WATCH and wait, so keep up on MRI's.

[minerva1221]

Thank you for the response, ANGuy.  I love the idea of a magic wand in the future to make this not such a scary decision.  Let's see...W&W, radiation, surgery, OR magic wand?  I'll take the wand please.   

...Second, the answer to which way is the best way to go is "yes".  You're young, it's small, treatment shouldn't be a big deal, get it over with.  Conversely, you're young, it is small, treatment won't be a big deal in 10 years, what's the rush?  They are both correct, legitimate plans.  For me, I am waiting, one MRI at a time.  I've had one.  In December, I get my second.  At some point, most likely, I will have to pull the trigger and get surgery.  If it's 10 years from now, I'll be 57 and that won't be too old for surgery.  In 10 years, they may have a magic wand to fix these things.  Who knows? 

Some things to consider, and not meant to scare you, at 37, if you had surgery and lost some aspect of your quality of life, would you have rather waited another 10 years?  Would you rather be 47 with a permanent condition or 37?

At any rate, you are in a good spot finding it when it is small.  Many people don't find out until they have a very big one that needs to come out NOW!  WW isn't an option for them.  You are not loosing any opportunities while waiting a few weeks, or months or even a year while you figure out what you want to do..  Just remember, it's WATCH and wait, so keep up on MRI's.

I guess my thinking is that the main opportunity I lose by waiting is the chance (and I know it is only a chance, not guaranteed...but the odds are arguably better while the AN is still small) to preserve my hearing.  I'm a consultant so communication/listening to clients is a big part of my job.  In the grand scheme of things, SSD is probably not a huge deal.  But, if I wait, lose my hearing, and end up facing surgery down the road, I would wonder if I could've saved it had I acted earlier.  It's definitely a double-edged sword.  That's what makes this so much fun.   

[CHD63]

Hi minerva1221 .....

Welcome to this forum of caring, supportive new friends.

The decision to treat (and by which means) or to wait and watch is one of the most emotionally difficult parts of this journey.  Only the patient him/her self should ultimately make the decision after consulting with medical professionals, doing research, evaluating the reports of other patients, checking on her/his own work or family situations, etc.

That being said, in my mind the most important thing is to get medical opinions from professionals with vast experience in treating specifically acoustic neuromas ..... not just general neurosurgeons or general radiation oncologists.  There are many experienced physicians around the country who will do free evaluations of your MRIs, which helps during the decision-making process ..... even if you do not ultimately go to any of them for actual treatment.

Although waiting for possible better treatment options in the future sounds good, keep in mind that the hearing loss with acoustic neuromas is often permanent.  Therefore, waiting months or years can sometimes result in additional permanent hearing loss ..... just something to think about.

Best thoughts.  Clarice

[PaulW]

I think it is worth checking out these links.

http://www.ncbi.nlm.nih.gov/pubmed/25077326

http://www.ncbi.nlm.nih.gov/pubmed/22682708

http://www.ncbi.nlm.nih.gov/pubmed/19057423

I am now over 4 years post radiation and my hearing is still pretty good.

[PaulW]

Maybe the magic wand is a possibility in 10 Years...

Some interesting findings which could lead to drug therapy

http://www.ncbi.nlm.nih.gov/pubmed/25245477

[minerva1221]

Thank you, Clarice and Paul.  Every bit of info helps (as long as I try to keep it balanced and not go off the deep-end with too many "what ifs").  It is definitely an emotional rollercoaster....and this is just the decision part.  I can only hope once the decision is made, it will get easier from there.