Author Topic: Newbie in Indiana  (Read 5405 times)

golfextreme

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Newbie in Indiana
« on: February 25, 2012, 06:59:42 pm »
Hi everyone! Just joined the sight and am looking for any insight from people. I was diagnosed with a large (approx 3.5cm) AN end of November 2011. I've been doing the legwork myself and found Dr. Cohen-Gadol in Indianapolis through the ANA website. Does anyone have any experience with him? He's through Goodman Campbell brain and spine.

MNTim

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Re: Newbie in Indiana
« Reply #1 on: February 29, 2012, 04:48:35 pm »
Welcome to the site, kind of!  Hopefully we can be of help.  I haven't seen any Indiana Drs mentioned by users (I grew up in Indiana so I notice those things).  Depending on what part of Indiana you are located in Drs have been mentioned in Chicago and Cincinnati.  Dr. Tew at UC comes highly recommended. 
That being said staying close to home has a ton of benefits. Obviously you want the best outcome possible but couple that in with proximity.  My third craniotomy (unusual circumstances) was completed January 2011, yesterday I developed flu like symptoms and soreness in the surgical area.  As a precaution I visited my general practitioner.  She became alarmed because of the location of pain and symptoms and recommended that I go to an ER for testing.  I would have liked to go to the hospital where I had the last surgery but it is 1-1/2 hours away also weather was not good.  So I had to make a quick decision on who locally would be able to handle the situation if it involved my tumor area.  I have had several other experiences where distance caused issues.
Review the questions on the ANA site and meet with the Indy Dr.  Also get some other opinions if you have time.
Best of luck.
Tim
8/31/09 hydrocephulus-emergent drain
9/2/09 5 cm AN debulked, Retro Sig Abbott NW
5/18/10 Second debulk, Retro Sig Abbott NW
1/31/11 Translab, 7/12 Graft Mayo Rochester, MN
2/12/11 Lumbar drain
3/14/11 Eustacian tube packing procedure for CSF leak
2/28/13 Platinum weight & Tarsorrhaphy

IndySkye

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Re: Newbie in Indiana
« Reply #2 on: May 01, 2012, 06:30:04 pm »
Hello! I live in Indianapolis and was diagnosed with AN two weeks ago. Since that time I have visited two amazing doctors at Vanderbilt in Nashville who specialize in ANs. Dr. George Wanna is the microsurgeon and his operating partner is Dr. Kyle Weaver, a neurologist. I have the upmost confidence that they will be able to achieve the very best result possible. Locally I'll be working with Dr. David Hall at Community. Dr. Hall is strictly to watch my progress when I return and to keep tabs on the other tumor.
(I was also diagnosed with a second, benign tumor called a meningioma which was found while looking for the AN.)

If you would like to get together to compare notes or just give each other a hug - I'm available!

I start balance therapy this week at the Balance Institute. My goal is to get myself ready for surgery which is currently scheduled for July 18, 2012 at Vanderbilt.

skye

(Hi skye and welcome. Your phone number has been removed due to AN Netiquettes. Please know that if folks want to contact you personally,they can PM/email you here on the site where personal contact info can be shared behind the scenes.  Best wishes as you move forward in your AN journey.... sounds like you have well thought-out plans!  Again, welcome! Phyl)
« Last Edit: May 02, 2012, 03:25:32 am by ppearl214 »

roverlaw03

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Re: Newbie in Indiana
« Reply #3 on: May 12, 2012, 02:42:36 pm »
I live in the Northeast side of Indianapols.  Two leading ENT's told me that I had TMJ and to just go see a dentist.
When to the Midwest Hearing Inst. and an MRI found the AN in the fall of 2011, at the age of 26.  All the doctors have argued about the size of my AN throughout this whole process, one states that its 7mm another says 1.4 cm.   I selected Dr. Cohen as my neuro go to person on my own and based on his reputation as a friend the the VP of Public Relations at IU Health.  Words cannot even express how excellent he is and his knoweldge.  Prior to making a decision on my treatment, I also saw doctors in IL, Ohio, and CA (UC Irvine).  There were a few that I liked out of state, but the care at IU Health Team has been excellent and comforting.

I completed FRS in Feb. 2012.  I go to acupuncture every week and take herbs specific for the hearing / balance nerves.

f you want to chat more, I would love to.  This is my first time posting.


2011 - 1.4 cm
2012 - FSR

leapyrtwins

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Re: Newbie in Indiana
« Reply #4 on: May 13, 2012, 12:52:39 pm »
As Tim said, I'd look into docs in Cincinnati (Tew is part of a wonderful group) or Chicago (Ear Institute of Chicago - Battista or Richard Wiet).

If you look on the main page of the ANA's website you'll see that both these groups are recognized by the ANA as Centers of Excellence - which means they have conformed to a rigorous set of standards when it comes to treating ANs.

I'm a patient of Dr. Battista's - if you would like more info. about him, feel free to email or PM me.

Jan
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

Tisha

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Re: Newbie in Indiana
« Reply #5 on: July 13, 2012, 12:09:56 pm »
I live on the northwest side of Indy and Midwest Hearing Institute also discovered my AN (after my regular ENT told me it was Meniere's disease...she didn't even have me go for an MRI or anything, plus she even had a neurotologist in the practice.  I didn't know there was such a thing at the time, but I digress....)

Matthew O'Malley discovered my AN, and his measurements were the same as Dr. Chang at Stanford.  He has moved to Florida and I now see Dr. Ostrowski on an annual basis for monitoring.  I'm surprised you have had problems with people measuring your tumor.  When I was at Stanford, one of the doctors pulled my AN up on the computer screen and showed me how they measure it...it seems faily easy and I'm surprised you had readings that were so different.

One of the ENT's who misdiagnosed you didn'thave the last name of Ball, did they?

tisah
1.7 x 1.0 x .9 cm (diagnosed Oct 2008)
1.8 x 1.2 x 1.1 cm  (July 2010-swelling)
1.5 x .9 x .9 cm  (Mar 2013 - 5 yr MRI)
Cyberknife at Stanford, week of 1/12/09 -  Drs. Chang and Soltys

roverlaw03

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Re: Newbie in Indiana
« Reply #6 on: July 18, 2012, 07:52:09 pm »
The first ENT I saw was Dr. John Goldenberg, who stated it was TMJ.  The second ENT was Dr. Scott Hockett.  I assume you are refering to a Dr. Valerie Ball.  My father saw her for some ear/neck pain, which she said was a severe degenration of the discs in his neck.  Two neck specialist have stated it is arthristis.  Not a big fan of ENT's.

I took see Dr. Ostrowski, but he is not my main doctor for the health issue, he is acutal the one who stated the AN was smaller then what everyon else said.

According to the various specialists that I have seen, AN's can vary in size by the MRI slices/pictures the radiologist pulls and the quality of the MRI machine itself (ie. IU Health's MRI machine v. ProScan).  Diffrent doctors also measure the AN's in different ways as well.

I am almost at my 5 month mark after radiation. 
2011 - 1.4 cm
2012 - FSR

Tisha

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Re: Newbie in Indiana
« Reply #7 on: July 23, 2012, 12:28:19 pm »
Hi,

Yes, Valerie Ball.  She was my regular ENT for years, replacing the doc that retired.  I only went for sinus infections, things like that to her.  I can't tell you how dismissive she was of my "condition" after trying antibiotics, etc...telling me it was Meniere's disease and letting me go my merry way.  As I said, there is a neurotologist in her group.  Why she didnt' send me his way, I will never know.  I found out on my own about neurotologists when I started visiting Mieniere's disease websites.

I can't tell you how mad I was at her when I found out I had an AN.  That thing could have grown for several more years undiagnosed if I didn't start researching on my own.  I had the distinct pleasure of telling her what it turned out to be a year later when i saw her at a track event (her nephew and my son went to the same grade school).

Anyway, I also have a friend who does MRI's.  She said she's worked at several and one of the best is CDI...better than Northwest radiologists.  She's worked at both.
1.7 x 1.0 x .9 cm (diagnosed Oct 2008)
1.8 x 1.2 x 1.1 cm  (July 2010-swelling)
1.5 x .9 x .9 cm  (Mar 2013 - 5 yr MRI)
Cyberknife at Stanford, week of 1/12/09 -  Drs. Chang and Soltys

golfextreme

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Re: Newbie in Indiana
« Reply #8 on: July 31, 2012, 07:40:36 pm »
Sorry I haven't gotten back on the board in a while. I had my surgery on April 26th with Dr Cohen (neurosurgeon) and Dr Fritsch (otolarayngologist). 4+cm mass removed (about 98%-99%). Facial nerve intact, but severely weakened. Major balance issues and complete SSD on right side. The surgery was even more of a success than predicted, just the effects of the surgery were worse. I had to spend 7 days in the hospital and 5 days in a rehab center due to the balance issues.
My facial nerve has still shown no improvements, but balance is much better and I just started back at work last week. I highly recommend these two doctors. They did a fantastic job!

leapyrtwins

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Re: Newbie in Indiana
« Reply #9 on: August 01, 2012, 11:20:01 am »
Golf -

glad to hear your surgery is over and that you had fantastic doctors.

A 4+ cm AN is definitely not a small one, so I'm glad your surgery was an even bigger success than anticipated.

Recovery takes time - and sometimes lots of patience - so hang in there.

Best,

Jan

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