Pre-Treatment Options > Pre-Treatment Options

recently diagnosed audio engineer

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ToneControl:
Hello All,

Robert here, posting from Spokane, WA.  Figured I should introduce myself since I've been lurking on the board for the past few days, since seeing the results of my MRI and being told I have an AN.  Here's the background:

1cm AN (located on the balance nerve, according to my doctor)
began noticing some hearing loss a couple months ago (tested down about 30dB on audiometry), having some tinnitus issues
diagnosed last Wednesday after spending six weeks being told it was probably a sodium issue in my middle ear

now the fun part:

I'm 42, and have had good health over the years, for the most part
I've been working as an engineer/producer in my own recording studio for the last eight years

I think the shock of the diagnosis is finally wearing off, and I am in the process of exploring my treatment options.  When I left the doctor, with my 2 year old and 4 year old in tow, I told him I was leaning towards "watch and wait", as he had said that he estimated this thing has been growing in me for five years, and that I didn't need to rush into a decision.

Now as I start researching all the myriad arguments of surgery vs. GK/CK, I feel more inclined to make a decision and get going.  My biggest concern is doing whatever has the best chance of preserving hearing in that ear.  Of course, the prospect of losing hearing in one ear is a life altering event for anyone, but for me, it could very likely be a career ender as well.  I find it ironic that a week ago, I had a major label artist in my studio, and was being complimented by his guitarist for the depth of sounds I was getting by stereo miking his amp, only to turn around and be told two days later that there's a 50/50 chance I will end up deaf in one ear.  I try to tell myself that Phil Spector managed to make a decent career out of recording in mono, but it's small comfort (not that I would trade places with him now!).

So... my current line of thinking is: rather than wait six months for another MRI, realizing that while the tumor is likely growing slowly, my hearing will only continue to deteriorate in the meantime, I should look seriously at surgery (middle fossa approach?), or GK/CK.  I've seen odds for hearing preservation ranging from 50% (or lower for larger tumors) up to 78% at Seattle Ear Clinic.  I'm still looking for long-term preservation rates for Gamma Knife, or Cyber Knife.  It seems that there is a slight chance of regaining some of what's already been lost through surgery (along with the attendant risks), whereas with radiation, things won't improve, and may continue to decline years down the road.

I already have a sincere appreciation for all the love and experience that is evident on this board, and am looking for input from those that have gone before.  Okay.. enough rambling for now, time to get some sleep.  Thanks so much!

-robert

Sue:
Hi Robert,

Welcome to the forum, but sorry you ended up joining our exclusive club.  I know that other folks on this forum will chime in soon and tell you some statistics and opinions on your questions.  I am sorry that this AN that you recently discovered you had is something that will endanger your career. It's bad enough to get this crazy thing and then have it compromise what you do is like kicking you when you're down!  There are several folks on here who have had treatment in Seattle, so they can certainly tell you of their experience. I had GK here in the Portland area and so far so good. 

My hearing was pretty well compromised in my AN ear by the time I got to treatment, so there wasn't a lot of talk about hearing preservation for me.   Since this is vital to your career, I say follow your instincts and if that is telling you to do something now...then you certainly can.  It certainly won't get better on it's own and will only get worse (or it might stay the same, many on watch and wait report no changes)..so you'll have to make a decision one way or the other eventually.  Good for you for planning ahead, I guess.  ;)

Well, yes, it's late and I'm rambling...so take care and good luck to you in your eventual treatment and recovery.  This is a real bummer trip to be on, but the company around here makes it a  lot better!

Take care,

Sue in Vancouver USA

Mark:
Robert,

I'll add my welcome to our fun group that nobody wanted to be a part of  ;)

You've obviously started doing some good research and are asking a lot of the right questions. I do want to address one comment in your post that I am curious as to where you heard it and I would suggest is incorrect.

It seems that there is a slight chance of regaining some of what's already been lost through surgery (along with the attendant risks), whereas with radiation, things won't improve, and may continue to decline years down the road.

1) there is very minimal probability of of regaining what hearing has been lost with either option, but from what I've seen those rare occasions have more often occurred with radiosurgery, not surgery. Your most likely best outcome is to have the hearing remain unchanged after treatment.

2) I'm not sure where the studies are that support that hearing frequently disappears some years after treatment. I haven't seen them and I'm currently 6 years out from my CK treatment with my hearing still at pre-treatment levels. My 2 cm AN was given about a 20% chance of saving usable hearing with surgery and from what I've read over the years I would guess a 1 cm is somewhere around 50/50. Again, those are odds for maintaining usable hearing , not necessarily current levels. On the other hand Fractionated Radiosurgery in a study done recently at Stanford puts maintaining current hearing in the low 70% range.

There are no guarantees and with either approach and both bad and good outcomes can occur, however, the studies are pretty compelling that hearing preservation has higher odds with radiosurgery as the AN size increases. In mm size ones, both options are probably pretty comparable, but at 1 cm, 2 cm , 3 cm the split becomes pretty dramatic.

Mark

goinbatty:
Robert,
I am so sorry.  I can't imagine the stress you must be under in that this can affect your career.  I guess my mode of thinking is similar to yours in that wouldn't it be better to attack this thing while it's still smaller. 
Mark,
Regarding your last statement - studies are pretty compelling that hearing preservation has higher odds with radiosurgery as the AN size increases. In mm size ones, both options are probably pretty comparable, but at 1 cm, 2 cm , 3 cm the split becomes pretty dramatic - I had not run across that in all my reading.  Can you direct me to articles regarding that.  Much appreciated.

Sandra

Windsong:
...my understanding is that hearing preservation possibilities are pretty good with rads given all the possible variables that go into hearing....

 here's one study...

http://www.ncbi.nlm.nih.gov/sites/entrez

it was published this year but covers a study over a span of years slightly before....

a number of studies do say that 100% assuredness with any An treatment is not there.... but you will find that some people have retained their hearing from a few types of treatment for an An.....

there are no guarantees with any treatment  as far as I know although some definitely don't such as trans lab,  and some  are better at it  and retro is a possibility and some of those treated with rads still can lose theirs over time down the road or maintain it .... but i'd say that if there is a chance of saving it or keeping it etc. I'd go for it given that all other things are also positive in that choice for you...

all the best,
windsong

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