Recommendations for the St. Louis Area

[DJP]

Hi, 
Last night the radiologist called with the results of my MRI.  I have Acoustic Neuroma.  From what the radiologist implied, the "thing" is not a slow-growth.  After spending a a few minutes freaking, I started scouring the Internet  to find information on Acoustic Neuroma/Vestibular Schwannoma.  Right now my most pressing need is to gather recommendations for physician/surgeons in the St. Louis area.  The radiologist did give me one name and I will be seeing my ENT next week but I wanted to go in with as much information under my belt as I could find.  The one thing that a number of sites stressed is that you need to get someone who has done this surgery many time.  How on earth do you find that out. 

Any help or words of encouragement would really be appreciated.  Thank you.

[sgerrard]

Although I grew up in St. Louis, I don't personally know about AN doctors in the area. However, a search of the forum turns up a few fairly recent posts:

This one has some names, and a post from the AN support group leader in St. Louis.
http://anausa.org/forum/index.php?topic=9050.0

More info on the St. Louis group: http://www.anausa.org/support_groups_by_state.shtml#missouri

The next one was for Springfield, but many of the recommendations are in fact for St. Louis:
http://anausa.org/forum/index.php?topic=5407.0

And this one is about GammaKnife in St. Louis:
http://anausa.org/forum/index.php?topic=5875.0

Unless your AN is huge, you do not have to act in weeks, more like months. Take a breath and spend a week or two looking around this forum, and making contacts in the St. Louis area as well. Some people end up traveling out of town to get treatment, perhaps to Chicago or even LA. It is worth it to do a little homework.

And welcome to the forum as well.

Steve

[Cheryl R]

It is a bit  a ways but the University of Iowa has a super neurotologist who does ANs on a frequent basis.   Dr Bruce Gantz.      He is like many surgeons though who like surgery versus having radiation.      So one needs to see a dr who does radiation for info about that choice of treatment.               There have several of us on the forum who have been to Iowa City and feel has went well.   
    It is scary to find out about having an AN and now what to do.        We can give you help here as you have questions.
                                                       Cheryl R
                                                         
     

[DJP]

Thank you, everyone.

Every lead is appreciated and I will do my research.  I'll let you know what I discover in the hope that someone else will find it useful.  I am one of those people who are tend to want to fix things "NOW".  My ability to be patient is a family joke.  So this is going to be difficult for me.

Again, thank you.

[leapyrtwins]

DJP -

I'm in the Chicago area and am very happy with the results of my surgery.  My neurotologist is Dr. Robert Battista (Ear Institute of Chicago) and he does GK (gamma knife) as well as surgery - translab and retrosigmoid.  Dr. Richard Wiet is also a neurotologist at Chicago Ear and he does mid-fossa surgery and well as translab.

If you'd like more information on them, please email me.  My email address is listed in my profile.

In the meantime, if you haven't already, please contact the ANA and ask them for their informational brochures.  They are very helpful and will shed a lot of light on acoustic neuromas and their treatment.

Best,

Jan