Author Topic: surgeons in the midwest-looking for suggestions  (Read 3884 times)

rmkelly

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surgeons in the midwest-looking for suggestions
« on: April 29, 2018, 07:35:23 am »
 I have recently been diagnosed with AN.  I am in total shock and I am scared! I feel fortunate because it seems the only symptoms I have so far is mild hearing loss in the left ear and mild ringing.  We live in Indianapolis and I am looking for a surgeon in the Midwest.    If you have any suggestions please let me know. 

dalemccl

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Re: surgeons in the midwest-looking for suggestions
« Reply #1 on: May 03, 2018, 09:08:17 pm »
You asked about "surgeons" so I think you are probably planning for surgical removal of the tumor.  I can't help with surgeon names but if you end up considering radiosurgery treatment instead, Dr. Brian Chang at Parkview Regional Medical Center in Fort Wayne does Cyberknife. He treated my AN last April with Cyberknife.  Also, I've heard that I.U. Medical Center does Gamma Knife, (in Indy I think). 

Have you and your doctors already decided that surgical removal is a better choice than radiosurgery for your particular situation?  (As a newly diagnosed patient, if you are not yet familiar with radiosurgery treatment for AN, I highly recommend you check into it before making a final decision on treatment approach so that you can choose the best treatment for your situation. There is a sub-topic in this forum for Radiation/Radiosurgery. It has lots of information and patient stories.) 
« Last Edit: May 03, 2018, 09:38:46 pm by dalemccl »
10/2015 16mm x 9mm right-side AN found. W&W
01/2016 15mm x 6.7mm. Still W&W
01/2017 19mm x 10 mm.  Decided on CK
04/2017 20mm x 13mm  prior to 5-session CK at Parkview Fort Wayne, IN
10/2017  6-month MRI: 20.6mm x 12.9mm
04/17/2018 1 year MRI: 18mm x 11mm  x 11mm

Cheryl R

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Re: surgeons in the midwest-looking for suggestions
« Reply #2 on: May 05, 2018, 06:30:57 pm »
Univ of Iowa does a large number of AN surgeries.        Many patients from out of state.        There are also centers in Cleveland and Cincinnati.     I am an Iowa  so do go to Iowa City.   Found to become NF2 over time so 3 tumors removed.     Still hearing on one side.                   Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

rmkelly

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Re: surgeons in the midwest-looking for suggestions
« Reply #3 on: June 02, 2018, 04:55:19 pm »
Thank you for the suggestions... I really appreciate the advice....I do have some big decisions so any  insight is appreciated

Greece Lover

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Re: surgeons in the midwest-looking for suggestions
« Reply #4 on: June 04, 2018, 02:25:48 pm »
I'm also all in favor of University of Iowa.  I"d check into Dr. Marlan Hansen.  It's a bit of a drive, you don't want to mess around with this and it could be worth it. I can't say enough good things. PM if you'd like more info.

I'm really glad I had surgery.
Vestibular Schwannoma 1.2 cm. Right side.
Middle fossa surgery at University of Iowa on May 9 2016.
Hearing saved.  Face is fine. Balance pretty darn good most days.
One year follow up MRI showed no tumor. 
Five year follow up showed no tumor, so I'm in the clear.

leapyrtwins

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Re: surgeons in the midwest-looking for suggestions
« Reply #5 on: June 08, 2018, 11:20:56 am »
Hi, rmkelly -

one of my best friends from college lives in Indy. 

My surgery (11 years ago) was done in the Chicago suburbs by Dr. Robert Battista @ the Ear Institute of Chicago. 

https://chicagoear.com/

I highly recommend him.  In addition to doing surgery to treat ANs, Dr. Battista also does radiation.

This is very important because it means he isn't "biased" when it comes to one treatment option vs another.

Docs who do surgery, typically recommend surgery.  Docs who do radiation, typically recommend radiation (if the ANs size and location make it possible).  You should consult with a doc who does both in order to get the pros & cons of each.

I've referred lots of people to Dr. Battista for both ANs and BAHAs - and all of them have thanked me.

If you do see him, tell him Jan sent you!

Good luck!

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