I don't like that something is growing inside me

[JudiK]

I have been diagnosed with a small AN and offered two options of treatment. The wait and see vs middle fossa surgical approach. 
I don't see the value of waiting to get it out as I am healthy now and have most of my hearing (60% sudden hearing loss that has mostly returned) and don't want to chance loosing it fully again which I am told could repeat. 
I am 61 years young and am deciding on S Fla vs House for the procedure.
Any comments are welcome-

[CHD63]

Hi JudiK and welcome to this forum of caring, supportive new friends .....

Although I am sorry you have been diagnosed with an AN, you have come to the right place for understanding people.

As you are finding out, choosing to wait or how to treat is one of the most daunting aspects of this whole journey.  Some people can tough it out to wait and then there are those of us who just want it out of our heads.

If you have not done so already, you should send a copy of your MRI CD and audiogram to House for a free evaluation.  You might also want to send it to Dr. Rick Friedman at USC, who is also an excellent, caring physician and he will do a free evaluation.

Admittedly I do not know anything about the doctors at S Fla, but perhaps others on here do.  I would want to be certain they are extremely experienced dealing specifically with acoustic neuromas.

Many thoughts and prayers for answers and treatment decision.

Clarice

[arizonajack]

You might think about another option: Gamma Knife or Cyber Knife.

I was 65 years young when diagnosed with a small AN (3mm x 4mm x 9mm) and my AN side hearing was 90% gone. I watched and waited and 6 months later the tumor had grown by 20% and the hearing was 100% gone (and still is).

I sent my MRI to House in CA for the free telephone evaluation. The surgeon spent 5 minutes on the phone with me and recommended translab surgery. I learned later that House always recommends surgery because they sell surgery.

I was fortunate to live in the same city as the Barrow Neurological Institute (Phoenix) which has a multi-disciplined Acoustic Neuroma Center. My neurosurgeon is highly experienced in surgery and radiation and after a thorough evaluation of my MRIs, age, medical history, and AN size, agreed that Gamma Knife was my best course of treatment, which had been my preference in the first place rather than have my head cut open and have tools poking around in there.

There are studies that show that surgery and radiation both can preserve hearing under certain circumstances. But there are no guarantees with either.

I've been on this site for a couple of years and I've learned the following (there are exceptions) based on my own experience and the experience of others:

ANs grow.
Hearing continues to deteriorate.
Watch and wait is often a bad idea.

You'll find plenty of support and excellent resources here.

[minerva1221]

Hi JudiK.  I am in Texas but these are the same 2 options which I find myself currently debating. 

The first doctors I saw both went straight to recommending middle fossa surgery and gave reasonable explanations for why they didn't think the other options were as good for me. 

The next round of opinions I got frustrated me at first because they wanted to "educate" me about all of my options and then let ME decide (what?!).   Dr Mickey, one of the neurosurgeons I saw, completely shocked me because he wasn't pushing me towards surgery!  He explained he firmly believes his job is to educate patients on all of their options and that his patients will ultimately make the best decision for themselves.   I left there feeling completely deflated because this is such a difficult decision and I just wanted them to tell me what to do!  A couple of days later, I saw Dr Kutz, another neurotologist, and he had much the same approach in wanting to educate me so I could decide for myself. 

With a small tumor, pretty much all of the options are available to us and I had been completely overwhelmed by that.  I kept quiet for several days and just let my inner dialogue play out.  Things started to "click" as far as what I felt made the most sense to ME.  And I now understand and appreciate what Dr Mickey meant about letting his patients decide!  Different patients can be told the exact same thing and walk away with a different impression or decision.  After over a month of reading, doctors visits, talking to other patients, and lots of praying, I am now leaning towards the, "why wait?" approach.  Others in my shoes may process the same information and say "why have surgery until/unless I have to?"  It is very much a personal choice.

I am still not to a 100% decision, but I can offer this in the way of advice:  Get several opinions, find experienced doctors you feel most comfortable with, educate yourself, talk to other patients who have had the same procedures you are considering (from your doctors!) and listen to your gut.

Wishing you peace and clarity!

[CHD63]

Well said, minerva1221 .....

When I first heard my diagnosis, I was emotionally knocked flat and unable to process all of the information being thrown towards me  ..... my brain sort of froze in place.  I just wanted someone to tell me what I should do and not involve me in the decision-making process.  Of course this was totally illogical thinking and when I calmed down a bit, it became clear that ultimately i was the one who needed to make the treatment decision ..... with input from knowledgeable sources.

I have had a number of medical crises in my life and the one thing I have learned is to never say afterwards, "What if .....?"  Do your homework, pray/meditate, and go with your gut feelings and do not look back.

Best thoughts for discernment during the decision-making process.
Clarice