Chicago - new diagnosis

[otmba]

My husband was recently diagnosed with AN. I don't have details on the size or location of the tumor. The MRI showed a tumor and the ENT immediately referred us to Dr. Leonetti at Loyola University and wouldn't give us much more information.

I've been poking around on this forum (which seems like it will be an incredible resource) and have not seen any mention of this surgeon. We have also scheduled an appointment with Dr. Battista at the Chicago Ear Clinic (who I have seen mentioned). Once I have the MRI and audiogram, we plan to send this to House for a consult.

We have 2 small children at home - he is a stay at home dad. We don't have family in the area (though I am sure some will travel in to help), so I would prefer to have our care locally if possible and I feel like there should be good options in Chicago. I'm starting to get a little overwhelmed reading about the different treatment options and thinking about the possibility of surgery and recovery. Am trying to take this one step at a time and step 1 seems to be finding the right physician. 

I'd be interested in any feedback on Dr. Leonetti or Battista or anyone else in the Chicago area.

[arizonajack]

Welcome to the club that nobody wants to be a member of. 

You'll find a lot of support and helpful information here.

Do you mean the Ear Institute of Chicago? It is listed as a resource on the ANA website:

http://anausa.org/index.php/medical-resources/medical-center-directory/ear-institute-of-chicago

You may have to join ANA (if you haven't) in order to have access to the site.

But the Institute has a website:

http://www.chicagoear.com/

Chicago has two support groups that you can contact for information on local resources:


Chicago
Leader: Ellen Nuebel
847-971-0896
enuebel@comcast.net
 
Chicago - Southwest
Leader: Meagan Casey
630-541-3914
meagancasey22@gmail.com
 
I ran a search for Chicago Acoustic Neuroma and came up with:

http://dizzy-doctor.com/index.php

I recognize Dr Hain from a variety of articles that came up during my own early search for information.

Another resource that came up:

http://www.chicagock.com/conditions-treated/brain-tumors/acoustic-neuroma/

CyberKnife is only one option depending on size of the tumor and symptoms.

Another resource:

http://www.teamofspecialists.com/redleafchicago/

None of that is to be construed as a referral or testimonial, just stuff I found online. You'll probably find others as you do more research.

[otmba]

Thank you for taking the time to provide such a thoughtful reply and for the quick research.

I had found some of those resources - we have an appointment with Dr. Battista from the Chicago Ear Institute on August 30th. Our appointment with the surgeon at Loyola is on August 28th. I will look into Dr. Redleaf as well. My husband is picking up the CD of the MRI and audiogram results from the hospital today and we plan to send those to House for a consult.

I also want to consider radiosurgery. The neuroma is measuring at 15 mm x 20 mm x .10mm; not sure if that is small enough to be a candidate, but definitely something we want to discuss with the physicians .

[terisandler]

The size is only one factor.  Location is another.  Also your husband's age.  Mine is 18x11x14 mm and I was a candidate for cyberknife surgery.  I am 61 years old.  I had my CK in May of this year and recently had my first follow up MRI.  My AN appears to be stable. 

Best of luck to you as you travel this path.  This group is a wonderful source of support.  If you are on Facebook, there are several AN groups offering a lot of support.

[arizonajack]

I also want to consider radiosurgery. The neuroma is measuring at 15 mm x 20 mm x .10mm; not sure if that is small enough to be a candidate, but definitely something we want to discuss with the physicians .

ANs up to 25mm are often good candidates for radiosurgery.

But, as Teri points out, there are other factors involved in making that decision.

Mine was 3mm x 4mm x 9mm when it was diagnosed in April 2012 but I was almost completely deaf on that side. When the AN was 4mm x 4mm x 11mm in Oct 2012 I was completely deaf on that side and opted for Gamma Knife.

If your husband still has functional hearing on the AN side, then hearing preservation is an important factor.

[jkchum]

I recently had my surgery done on Monday March 6th with Dr. Manuel Ferrera at the UWMC in Seattle.   My tumor was fairly large at about 4.5cm.  Dr. FERRERA was able to completely remove my tumor and I do not have facial paralysis.   I highly recommend this doctor if you are in the area.

[Greece Lover]

Hi, sorry for your diagnosis!  I'm about 3 hours west of you in eastern Iowa.  I know one person on this forum, whose name I think is Jet, who had an amazing surgery in chicago.  It is important to go to a place with as high-volume in AN as possible.  Find out how many these places do a year, and which surgical approaches they use most frequently. 

I had a great result at the university of Iowa.  They are a high volume center.  It would be about a 4 hour drive for you, but could be worth given them a call if you're not happy with what you find in Chicago.

[Greece Lover]

Jet747 is the person I'm thinking of.  He was really helpful to me, and I'm sure he'd be again if you DM him.

[Cruzinpa]

Hi! If you choose "search" and type in "Leonetti", 3 pages come up where others on the forum have mentioned him. I hope this is helpful!

[Cruzinpa]

Oops didn't realize this is an old thread.

What/who did you end up choosing for treatment??