Author Topic: recently diagnosed audio engineer  (Read 7591 times)

Dana

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Re: recently diagnosed audio engineer
« Reply #15 on: September 08, 2007, 06:04:06 pm »
Robert-
I think "Van Gogh Recording" is very funny, too.  And, as battyprincess said, better to keep one's humor in all this.  I'm especially glad that you're able to maintain a sense of humor, since the AN affects your identity probably more than others of us. 

I'm in western Washington, Ocean Shores.  I went to the Univ. of Washington, which has a team of doctors and others who specialize in acoustic neuromas.  They arrange their schedules so when you have an appt, you meet with ALL of them.  The meeting I had with them gave me a pretty full range of options, with no one pushing one treatment over another.  The doctors are Larry Duckert, Robert Rostomily and Jason Rockhill.  They do microsurgery (both kinds, I believe) and Gamma Knife.  I didn't ask about Cyberknife, but they seem like knowledgeable folks and are very helpful, so it might be worth a call to Dr. Duckert to ask if they might be able to help you make a decision including the CyberKnife option.

Below I've cut-and-pasted what Raydean, another member of the ANA Forum who's from western Washington, told me when I was first diagnosed, giving her recommendations.  It's generally considered in the Forum that Raydean knows what she's talking about, so I thought it might add to your "knowledge" base of Washington resources.  I'm glad you have family in the Seattle area, since bigger cities are, I think, going to have medical teams with more experience.  Spokane ain't close to Seattle, but it would be worth the trip, I think.

This is what Raydean said:

"Going form the perspective of experience with AN's   At the top of my list
would be

Dr Sandra Vermeulen  (sorry only have her fax number)  Dr. Vermeulen is a
board member  of IRSA and is very knowledgeable, .  I would trust her with
my life . If I was going to go with radiation she would be the first person
I'd talk to.  She'll help in any way, she'll be up front with you and you
can easily talk to her.

DR Charles Mangham of the Seattle Ear Clinic.   Doctor Mangham is probably
the most experienced Doctor in the Seattle area for the surgical option.
(www.seattleear.com  for his website and contact info.   He Doctor Mangham
is a neurotologist that specializes in AN's.   The only complaint that I've
heard is that some people have found him difficult to talk  to.  My personal
experience was once I started asking questions and he understood that I had
had done some research I had no difficulty in talking with him.  For me his
experience spoke for itself.   Again, I would trust him with a family
members life.  Kathy Goertzen (Komo 4)went to Dr Mangham for a different
type of tumor (meningioma) .  With all of the research available to her.  I
think it spoke volumes when she chose Dr. Mangham.

Dr Douglas Backous of Virgina Mason Medical Center.  next to Mangham i think
this doctor is in second place for experience in the treatment of AN's for
the Seattle area .

This is a starting place .  There are other doctor's who are probably good,
but I strongly believe in the experience factor. "

Keep making music.......
Ciao,
Dana
1.5 cm AN diagnosed June 2007.   GammaKnife July 19, 2007 at Univ. of Washington/Harborview GK Center, Drs. Rockhill, Rostomily. 
After yearly MRIs for 5 years, it hadn't died. So I'm now leaning strongly toward surgery.

Gennysmom

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Re: recently diagnosed audio engineer
« Reply #16 on: September 10, 2007, 11:14:27 am »
Robert, no worries, I can tell you from experience that it's nice to have someone nearby who has been through what you're going to go through...no matter what your choice is.  And a place like this as well, because there always seems to be the inevitable "is this supposed to be happening" that will go through your head.  There's good folks down in the SF area too.  Dana is right about Raydean in this neck of the woods, she's got the info on all kinds of things, not just AN.  One daughter has MS, one has Chiari and possibly Lupus, so she's well informed on the brain. 

Keep us updated on what path you're headed on! 

Kathleen
3.1cm x 2.0cm x 2.1cm rt AN Translab 7/5/06
CSF leak 7/17/06 fixed by 8 day lumbar drain
Dr. Backous, Virgina Mason Seattle
12/26/07 started wearing TransEar

Jim Scott

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Re: recently diagnosed audio engineer
« Reply #17 on: September 10, 2007, 11:53:13 am »
Hi, Robert:

Just wanted to welcome you to the site/forum. 

You're in a tough spot (career in danger) but the good news is that you probably have a fair chance of retaining a good part of your hearing with radiation treatment. You seem to be on the right track and have received much good advice that I can't improve on except to state that, if preserving your hearing is paramount (and for you, it is) then the sooner you address your AN (likely, with radiation, due to it's small size) the better.  Don't rush into anything and don't get desperate, but don't waste any time, either.

I wish you all the best. :)

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

ToneControl

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Re: recently diagnosed audio engineer
« Reply #18 on: September 10, 2007, 10:34:09 pm »
Thanks again, everyone!

I heard back from Dr. Mangham at Seattle Ear today, as well as getting an email from Dr. Chang at Stanford this evening (it's true... the guy does check his email outside office hours!).  I will be sending copies of my MRI and 2 audiograms tomorrow.  I've got another appointment with my ENT here in Spokane on the 21st, but as I told the scheduler "I expect to pretty much have my mind made up by then".

I don't feel frantic, yet I agree with you Jim, that time is important in terms of dealing with this before more hearing slips away.  You guys have all been an incredible source of information and inspiration, and it's truly appreciated!

Bye for now...

- robert


"making records is like making sausages... you enjoy them more if you don't see what goes into them" - Bono
1.0cm AN, diagnosed July 2007.  Treated Cyberknife at Stanford Nov. 14-16 2007, Dr. Chang, Dr. Soltys.  -  42 year old audio engineer, 15 dB PTA loss, 100% SDS, tinnitus at time of diagnosis.  Now we wait and see...

Shadow

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Re: recently diagnosed audio engineer
« Reply #19 on: October 30, 2007, 06:24:15 am »
I don't work in the sound recording industry but have a collection of well over 1300 CD's and absolutely love the sound of music. I've always thought of myself as an audiophile and very descriminating (can't spell anymore however) when it comes to reviewing Cd's and the equipment to produce the sound. I've spent oodles of money on my home theatre and car so that I could enjoy the wonderful sound of music. THen along comes my tinitus. Then the MRI telling me I've got an AN. Then my previously great hearing starts dropping in my left ear to the point that I've lost from approx 1ooohz to 4000hz. but is just fine on either side of that range.  hmmmm vocal descrimation? lets just say i can't use a phone with that ear anymore.

Then I went for GK because I didnt want to lose what was left of my hearing. I'm 2 years out and just had my MRI. Lets just say having Murphy for a last name has once again played a part in my case. TUmour is growing again and when I went for my lastest hearing test it drops  before 1000hz now and stays there right across the frequency range.now my ability for vocal descrimation less than 62% and I'm a very good guesser.

I lose my enjoyment of your work and you may find it getting harder to do your work.  On the plus side I still take care of the sound at our meetings and at large assemblies where upwards of 4000 people attend and am able to "hear" whats going on with the sound better than some less trained people with two ears can.

Hope you do well with what ever treatment you choose and send me some new music to enjoy.  ;D

4cm in Pacific Northwest

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Re: recently diagnosed audio engineer
« Reply #20 on: October 30, 2007, 08:14:08 am »
Tone contol and shadow,

I thought this article might intererst you both...

http://www.hear-it.org/page.dsp?page=3852

cheers,

4
4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!

ToneControl

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Re: recently diagnosed audio engineer
« Reply #21 on: October 31, 2007, 11:52:54 am »
Thanks for the thoughts, Shadow and 4.

I appreciate the link you sent, 4.  I keep telling myself there might still be other options in the industry if I find that I can no longer continue engineering.

I can sympathize with your situation, Shadow.  I too keep telling myself that knowledge and experience should hopefully help offset what I may be starting to lose physically.  I've thought about setting up a compensating EQ network to use with headphones when I mix, but I don't want to aggravate my condition by having to increase the volume in my right ear.

I think a better idea is to spend some time "calibrating" my ears with tones and pink noise before a session, so my brain can hopefully do some compensation.  I believe that is starting to happen already for me, and I am fortunate that no clients have noticed anything (including those that I've told about my condition).

On the shameless self-promotion front, you can check out a few of the projects I've worked on at my MySpace page:

myspace.com/tonecontrolaudio

Best wishes to you both..

-robert
1.0cm AN, diagnosed July 2007.  Treated Cyberknife at Stanford Nov. 14-16 2007, Dr. Chang, Dr. Soltys.  -  42 year old audio engineer, 15 dB PTA loss, 100% SDS, tinnitus at time of diagnosis.  Now we wait and see...

Captain Deb

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Re: recently diagnosed audio engineer
« Reply #22 on: November 26, 2007, 02:35:00 pm »
Just found this thread and wanted to send ye a heaty AAAAARRRRR to ToneControl over on the Western Coast and I hope you'll keep us updated on your decision. Ain't it weird that the medical profession hasn't all gotten together on this one yet? Leave it up to us civilians to make such an important decision. It just stinks.
 Best of luck!



Capt Deb
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
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Larry

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Re: recently diagnosed audio engineer
« Reply #23 on: November 26, 2007, 07:50:34 pm »
Just spotted thi.

I had missle fossa and am vbirtually deaf in that ear. rthere are no guarantees re preservation of hearing with any procedure. Also, my AN has grown back.

My advice would be to watch and wait until you notice hearing changes, then straight into radiation treatment. That seems to have the better outcomes. Your profession requires hearing so you should also look into devices like Baha and trans ear that can help you with hearing loss followi9ng whatever treatment you need.

cheers


laz
2.0cm AN removed Nov 2002.
Dr Chang St Vincents, Sydney
Australia. Regrowth discovered
Nov 2005. Watch and wait until 2010 when I had radiotherapy. 20% shrinkage and no change since - You beauty
Chronologer of the PBW
http://www.frappr.com/laz

 


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