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Author Topic: Newbie from Indiana  (Read 4453 times)

AMD

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Newbie from Indiana
« on: August 03, 2008, 02:51:07 pm »
Hi everyone!

Glad I found this site.  Newly diagnosed, but sure I've had this for probably 10 years based on when I first started really noticing my hearing loss.  I am seeing 2 specialists in Indianapolis in the next 2 weeks (Drs. J. House and R. Miyamoto).  I understand they both have great reputations, but has anyone had experience with either??  I expect to be needing retro-sigmoid approach. 
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Left side 1.7 cm AN diagnosed 7/30/08
Misdiagnosed for 8 + years
Surgery, Sub-occipital, 11/17/2008 at Indiana University Hospital
Left SSD
Tumor much larger than expected. Facial nerves intact, but had RARE swelling resulting in brachial plexus injury and tracheostomy after surgery.

mindyandy

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Re: Newbie from Indiana
« Reply #1 on: August 03, 2008, 03:00:58 pm »
Welcome AMD!! I'm happy you had found us. Read posts and search your options. Listen to stories and post post post. We'd love to hear from ya..... ;D
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14mm dx 9/07. CK done Seattle  1 year MRI showed some shrinkage. 4 year MRI 2mm growth nothing conclusive. Trigminal nerve involvment Retrosigmoid Friedmand/Schwartz HEI March 7,2012

Jimbo

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Re: Newbie from Indiana
« Reply #2 on: August 03, 2008, 03:13:52 pm »
Hi,
Glad you found this forum. It has been invaluable to me. You didn't mention the size/location of your AN, which is obviously important in making a treatment decision. There may be other options besides surgery for you to consider. Take your time and research the best option for you.

Jimbo
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7 x 12 mm AN diagnosed April 2008.
Leksell GK performed at Columbia-Presb July 2008

Jim Scott

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Re: Newbie from Indiana
« Reply #3 on: August 03, 2008, 03:32:39 pm »
AMD:

Hi and welcome.  We hate to see anyone with an Acoustic Neuroma but we're glad you found the ANA site and these messageboards. 

I had gradual unilateral hearing loss for years before my diagnosis so I can empathize with your contention that you probably had the AN for 'years'  Most AN patients do.  I was 63 at the time I underwent Retrosigmoid surgery in 2006.  All went well.  I know you have a lot of thinking and planning ahead, but I wish you complete success and remind you that although we're not doctors, AN patients have a lot of very practical advice to offer, if you want it.  Just ask.  :) 

Jim

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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.

Julie A

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Re: Newbie from Indiana
« Reply #4 on: August 03, 2008, 04:05:56 pm »
Hello,

I am from Avon, IN and was referred to Dr Richard Miyamoto.  I have been extremely pleased with him and his approach for my AN.  He has had training at the House Institute as well.  I have a peer from work who had her surgery with Dr House in Dec 1997 and was pleased with her outcome.  If you would like more specifics, just let me know.  Take care.

Julie
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leapyrtwins

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Re: Newbie from Indiana
« Reply #5 on: August 03, 2008, 04:14:04 pm »
Welcome AMD & Julie -

I am from the Chicago area and had retrosigmoid surgery on 5/31/07 with Dr. Battista from the Ear Institute of Chicago.  As others have said, before you make your treatment decisions, make sure you research all your options.  You may find that instead of surgery you want radiation, but whatever you each decide, please know that we are all here to support you.

If you haven't already, I suggest you contact the ANA and ask them to send their literature to you.  It's full of valuable information.

Jan
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Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

AMD

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Re: Newbie from Indiana
« Reply #6 on: August 03, 2008, 07:51:43 pm »
Quote from: Jimbo on August 03, 2008, 03:13:52 pm
Hi,
Glad you found this forum. It has been invaluable to me. You didn't mention the size/location of your AN, which is obviously important in making a treatment decision. There may be other options besides surgery for you to consider. Take your time and research the best option for you.

Jimbo

HI Jimbo.  Thanks for the post.  I am reading a whole bunch of stuff on here....   My AN size/location info is in tiny print in the "signature" portion of my post. Thanks again....
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Left side 1.7 cm AN diagnosed 7/30/08
Misdiagnosed for 8 + years
Surgery, Sub-occipital, 11/17/2008 at Indiana University Hospital
Left SSD
Tumor much larger than expected. Facial nerves intact, but had RARE swelling resulting in brachial plexus injury and tracheostomy after surgery.

AMD

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Re: Newbie from Indiana
« Reply #7 on: August 03, 2008, 07:54:41 pm »
Thanks everybody!  I am sure I will have more questions as the days unfold.  Thanks for all your help and support! 
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Left side 1.7 cm AN diagnosed 7/30/08
Misdiagnosed for 8 + years
Surgery, Sub-occipital, 11/17/2008 at Indiana University Hospital
Left SSD
Tumor much larger than expected. Facial nerves intact, but had RARE swelling resulting in brachial plexus injury and tracheostomy after surgery.

Pooter

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Re: Newbie from Indiana
« Reply #8 on: August 05, 2008, 12:50:01 pm »
Welcome to the boards AMD and Julie.  Sorry I'm a little late.  There's too many places to find new people tho!  I can't be of any use on the doctor's unfortunately.  To be different, I had no clue about this thing until I was diagnosed.  I had some hearing loss and tinnitus and was diagnosed within a month or so, and before that I had NO symtoms or clue that something was growing there.  I wish you both all the luck in the world with your journey.

Brian
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Diagnosed 4/10/08 - 3cm Right AN
12hr retrosig 5/8/08 w/Drs Vrabec and Trask in Houston, Tx
Some facial paralysis post-op but most movement is back, some tinitus.  SSD on right.
Story documented here:  http://briansbrainbooger.blogspot.com/

"I must be having fun all wrong!"  - Roger Creager

btown

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Re: Newbie from Indiana
« Reply #9 on: August 05, 2008, 07:14:45 pm »
Hey AMD,

I'm from Indiana (Bloomington) and I was diagnosed with a 9mm AN in Nov. 2007. Like you, I was also referred to Dr. House and Dr. Miyamoto and did consult with both of them. Honestly, I liked Dr. Miyamoto a little better, but both are very experienced with AN surgery. However, in the end, I elected for Cyberknife (stereotactic radiation) as there is a new facility in Greenwood. I did Cyberknife in January, 2008 and just had my 6 month MRI this past week. I will see my Cyberknife doctor on August 22nd to find out what's going on at the 6 month mark. Given your size (1.7cm), you could very well be a candidate for radiation.  Something to consider. If you'd like to speak further about AN's, Indiana doctors, or my journey (so far...) let me know!

Regards,
Btown
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9mm AN diagnosed November, 2007
CK in January, 2008
1 year MRI shows no growth, 5mm shrinkage

Julie A

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Re: Newbie from Indiana
« Reply #10 on: August 06, 2008, 09:29:27 am »
Hi Btown,

It was great to read your post since Dr Miyamoto is my physician.  Based on my age, Dr Miyamoto has recommended surgery in the event my tumor grows.  I am going on the 20th for my six month follow up.  Just curious, who did you see in Greenwood? 

Julie A
Avon, IN
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AMD

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Re: Newbie from Indiana
« Reply #11 on: August 06, 2008, 05:54:27 pm »
Hi Btown,

Thanks for the info.   I saw Dr. House today and surgery is my better option because of the shape of my tumor, but radiation is also an option.  I see Miyamoto next week.  As I told Julie, I may have to tap you for some more info if need be.  Thanks again and hope all is well w/ your scans after cyber!

Amy  :)
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Left side 1.7 cm AN diagnosed 7/30/08
Misdiagnosed for 8 + years
Surgery, Sub-occipital, 11/17/2008 at Indiana University Hospital
Left SSD
Tumor much larger than expected. Facial nerves intact, but had RARE swelling resulting in brachial plexus injury and tracheostomy after surgery.

btown

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Re: Newbie from Indiana
« Reply #12 on: August 07, 2008, 01:05:10 pm »
Julie A--

I saw Dr. Hardacre in Greenwood, but he is no longer at the Cyberknife facility. I think he moved to Alabama. I did the treatment under his watch, but I now see Dr. Bryce Lord. You can check out their website at www.cyberknifeofindy.com

Later,
Btown
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9mm AN diagnosed November, 2007
CK in January, 2008
1 year MRI shows no growth, 5mm shrinkage
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