Author Topic: CHICAGO help picking a psysician  (Read 5773 times)

cceekkoo11

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CHICAGO help picking a psysician
« on: December 29, 2013, 01:11:22 pm »
Hi everybody,
I was just diagnosed with 4cm AN on the left side. I live in Chicago and i am trying to find patient reviews of neurosurgeons in the area. I know you have a lot of experience and i would be very thankful for each and every advice you all could give me on picking a physician. Does anyone know dr Byrne from Rush or dr Parsa from Northwestern? I already read some good comments for dr Battista in Hinsdale.
Thank you all
« Last Edit: December 31, 2013, 10:23:43 am by cceekkoo11 »

Jim Scott

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Re: help picking a psysician
« Reply #1 on: December 29, 2013, 02:30:54 pm »
Calling Jan B.!  Calling Jan B.!
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.

leapyrtwins

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Re: help picking a psysician
« Reply #2 on: December 29, 2013, 09:14:34 pm »
Bryne and Parsa aren't names I've ever heard of.

In the Chicago area the biggest names for AN treatment are Richard Wiet & Robert Battista - offices in Chicago, Hinsdale, and Elk Grove Village; both are also professors @ Northwestern Medical School; and John Leonetti - associated with Loyola Medical Center.  All 3 of them are neurotologists.

Richard Wiet's son, Mark, who practices with Wiet & Battista - is known to work out of Rush - but he's not as experienced with ANs.  He's younger and has done less procedures.  He's also a neurotologist.

I'm a patient of Dr. Battista's and I'm not ashamed to admit that I'm extremely biased.  In fact, I just made another contribution to the ANA in his honor.  He's a wonderful doctor who really knows his stuff.  He's very low key and has a great bedside manner.  I was highly impressed with him; so much so that he was my one and only consultation.  My surgery was 5/31/07 and my outcome was excellent.  I have had no regrowth and my only "side effect" from surgery is SSD - single sided deafness - that couldn't have been avoided.

Dr. Battista does both radiation (GK) and surgery (retrosigmoid and translab) as well as Cochlear and BAHA implants - plus all other kinds of ear surgeries.  He hasn't done as many surgical procedures as Richard Wiet, but that's mainly because he's younger.  He's very picky about who he works with - GK is only done with one particular radiation oncologist (Dr. Patrick Sweeney) and AN surgeries are only done with one particular neurosurgeon (Dr. Robert Kazan).  AN surgeries are done @ Adventist Hinsdale Hospital - small hospital w/private rooms; great staff; can't say enough good things about it.

If you want more info, feel free to email or PM me.  My email address is in my profile. 

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

elsie

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Re: help picking a psysician
« Reply #3 on: December 30, 2013, 08:01:23 pm »
I have to chime in with my extreme bias towards Dr. Wiet, who literally saved my life in 1988.  this was way before the internet, so I really didn't have a clue what i was potentially in for.  my father was with the ama at the time and found dr. wiet after some "insider" research.  my an was very large (about the size of a small orange, seems mine was so long ago that we talked about food comparisons, not cm or mm!) and complex, but dr. wiet and his team got it all (although waiting for final results from my december 2013 mri).  i have facial weakness, tinnitus, ssd and extreme dry eye, but that is about all - according to dr. wiet, i was extremely lucky and was facing an extremely bleak outcome before surgery (he told me this when i woke up from my surgery the day after)

dr. wiet just referred me to an ent/plastic surgeon to see if he could help with my smile.  nothing much but botox at this point, BUT, after we went through my history and he did his exam, he said that i have received excellent care since my diagnosis and surgery.  all drs. and therapists i have seen since my an have been referrals from dr. wiet.  i can't stress how important after care is.  it is crucial to be seen by drs. who have experience with ANs and the after effects.  it has made a huge difference in the quality of my life. choose a dr. who has a network of trusted referrals in place - eye, balance, physical therapy, etc.

you have a wealth of choices here in chicago, i would talk to them all and go with whom you feel most comfortable.  i'm new to this site, but would be happy to talk further with you as well.

good luck and we all will be rooting for you

Very large AN removed Aug., 1988 - pushed cerebellum aside, touching brain stem
Dr. Wiet in Hinsdale did 12 hour surgery, got it all
Total right-side facial paralysis for 6 months, 50 - 75% return
Extreme dry eye and tinnitus in both ears
Lost all hearing in AN ear
1/8/14  AN Regrowth confirmed

cceekkoo11

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Re: help picking a psysician
« Reply #4 on: December 31, 2013, 10:22:58 am »
Thank You really much for your help I will keep posting

leapyrtwins

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Re: CHICAGO help picking a psysician
« Reply #5 on: January 02, 2014, 02:34:18 pm »
Elsie's right.  Richard Wiet is another great choice.  He's one of the oldest names for AN treatment in Chicago and - on a somewhat related note - he performed the very first Cochlear Implant in Illinois.  He's been doing AN surgeries with Robert Kazan (neurosurgeon) for years. 

In addition, Richard is on the ANA's Medical Advisory Board; he's a highly respected doctor.

I've only met him a time or two - just enough to be introduced - but from everything I've heard about him he's a very nice man as well as a wonderful doctor.

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

sandyinwisconsin

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Re: CHICAGO help picking a psysician
« Reply #6 on: January 05, 2014, 07:18:18 pm »
I know a person who went to Loyola and had retrosigmoid, and she was back to work and school activities the next week.

Sandy
1 cm AN deep in the boney canal.  Treated with 26 treatments of radiation in December, 2013.  Please pray with me that this worked.

cceekkoo11

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Re: CHICAGO help picking a psysician
« Reply #7 on: January 06, 2014, 03:30:57 pm »
We finally met with Dr Robert Kazan today, and at this point we could not be more confused!
Previous team Parsa/ Micco @ Northwestern want to do retrosig. saying that it is the best way. Dr Kazan today was for translab approach, and his words were : If you wanted to do a retrosig I would not do the surgery at all, I would back off!
Which approach did you have? Does this determine the side effects that I am going to have post op? It seems like I cannot find the RIGHT way out of this!

leapyrtwins

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Re: CHICAGO help picking a psysician
« Reply #8 on: January 06, 2014, 08:37:16 pm »
Would trust Dr. Robert Kazan with my life - in fact, I did.  Docs usually base the surgical approach on several factors; size, location, and level of hearing among them.  Did you ask him why he wouldn't do retrosig?  I'm sure he has his reasons.

I was given the choice of retrosig or translab, but my AN was smaller than yours - and was thought to be even smaller based on my diagnostic MRI.  My AN was in the IAC on the 7th and 8th cranial nerves.  I chose retrosig in the hopes of saving the diminished hearing I had in my AN ear; I had decent word recognition.  Plus I wasn't comfortable with the docs just "taking" my hearing without at least making an attempt to save it; but that was a personal choice.  I was told that my chances of keeping my hearing were less than 50%.

While I chose my surgical approach, I also know that my docs (Kazan & Battista) won't let someone choose if they personally think the choice is clear for the best outcome.

Retrosig is often associated with headaches and facial nerve paralysis; although I have neither.  Also, Translab gives docs the best view of the tumor.

As far as when you can expect to return to work and/or school activities that's highly subjective.  Some patients recover faster than others but it has absolutely nothing to do with your doctors.  Recovery typically takes 6 weeks but everyone is different and recovery isn't a race.  I had retrosig and returned to work (desk job) part-time (half days) 2 1/2 weeks post op and returned full-time 4 weeks post op - but it's important to remember that was me.

I'm not sure there is a "RIGHT way out of this"; there have been patients who have consulted with numerous docs and gotten numerous opinions.  Unfortunately, surgical outcome (mainly side-effects) is basically a crap shoot.  It's up to you to weigh the pros and cons of each surgical approach and decide (based on the docs' opinions) what you think is best for you.  It's also up to you to decide which docs you think are best for you.

You should follow your head, your heart, and your "gut".  It's often the hardest part of the AN Journey.
« Last Edit: January 06, 2014, 08:45:02 pm by leapyrtwins »
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

elsie

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Re: CHICAGO help picking a psysician
« Reply #9 on: January 09, 2014, 12:27:31 pm »
I go my mri results back yesterday - my an is back - 9mm.  Have an appointment with Dr. Wiet in February, so am now a newbie in the re-growth world.  Is it best to just stick with Dr. Wiet, who I know and a completely trust, or are there others I should talk with?  If I should talk with others, do I set up appointments now, or set them up based on what Dr. Wiet tells me about the recurrence? 

Any advice? 
Very large AN removed Aug., 1988 - pushed cerebellum aside, touching brain stem
Dr. Wiet in Hinsdale did 12 hour surgery, got it all
Total right-side facial paralysis for 6 months, 50 - 75% return
Extreme dry eye and tinnitus in both ears
Lost all hearing in AN ear
1/8/14  AN Regrowth confirmed

leapyrtwins

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Re: CHICAGO help picking a psysician
« Reply #10 on: January 09, 2014, 08:27:24 pm »
Elsie -

think I read your post today on FB.  I'm so sorry to hear your AN is growing back.

If it were me, I'd stick with Dr. Wiet - a man you know and trust.  25 years from your surgery to your regrowth is an amazingly long time; so in my opinion, he did his job and he did it well.  It's not his fault - nor is it yours - that your AN has grown back.  Could happened to any doc or any patient.

Just my two cents worth,

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

elsie

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Re: CHICAGO help picking a psysician
« Reply #11 on: January 09, 2014, 09:56:33 pm »
thanks, jan.  that is my first thought as well.  he is my hero and i do completely trust him.  right now, i just need affirmation that my gut is working, althogh so far on this regrowth journey, i have been unfortunately spot on at every turn.

i unfortunately "outed" myself to more than the an facebook community with that post, but the unexpected support from friends and acquaintances has been amazing and a huge comfort.
Very large AN removed Aug., 1988 - pushed cerebellum aside, touching brain stem
Dr. Wiet in Hinsdale did 12 hour surgery, got it all
Total right-side facial paralysis for 6 months, 50 - 75% return
Extreme dry eye and tinnitus in both ears
Lost all hearing in AN ear
1/8/14  AN Regrowth confirmed