Author Topic: Louisville, KY  (Read 3079 times)

ANmom

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Louisville, KY
« on: August 01, 2013, 03:35:08 pm »
I posted this in the "Caregivers" section, but thought I would post here as well....

Hi all.  I am a mom of a 21 yo newly diagnosed AN patient. She would have been entering her first semester of her senior year of college in August, majoring in biology with a minor in chemistry.  She wants to go to vet school.  We live in Lousville, Ky.

Her AN is approx 2cmx2cm and is pressing on her pons/brain stem.  So far, thank goodness, her only symptoms are lower frequency hearing loss in her right ear and occasional dizziness.

Because of the location, size and her age, the docs we have talked to so far are in agreement as to the speediness with which they want to get it out.

Louisville has a great medical community and if she needed heart surgery or hand surgery I wouldn't hesitate to stay here.  But we are not known for AN surgeries.  I am having a hard time deciding where to go/who to see.  I have an uncle who is an emergency physician in Connecticut and is an alum of University of Michigan and has ties to a Dr. Arts there who has a great reputation.  My uncle wants us to go there.  Period.  No other discussion of anywhere else.  We are in the process of setting up a consult with Dr. Arts and his neurosurgeon Dr. Thompson.

My best friend (my maid of honor/honorary god mother to my daughter) is also an emergency physician in New York and all of her colleagues suggest Vanderbilt or Cincinnati.  We are in the process of setting up a consult with Dr. Weaver and one of his ENTs Dr. Wanna or Dr. Bennett.

I'm so overwhelmed and confused right now, I don't even know if I want to try to call Cinci, but Dr. Pensak seems to have a great reputation as well.

My uncle who is always my go to guy with medical issues has pretty much closed the door on discussion of anything but U of M.  I am feeling very alone and overwhelmed.  I know you're probably asking well, what about your daughter, what does she want?  Well, she's pretty much resigned to go wherever we decide and has deferred her decision to us/me.  (I'm a widow, btw, her dad passed away of cancer when she was 7 months old, so it has always been just the two of us.)

I'm not sure what I'm asking right now, but just needed to feel like I could talk with someone and here you are.  I guess if you have any opinions on any of the docs mentioned, I'd be grateful.  Otherwise, thanks for listening/reading.
ANmom

Barb909

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Re: Louisville, KY
« Reply #1 on: August 06, 2013, 10:17:12 am »
Hi ANmom,

I understand your feelings of being overwhelmed and confused.....knowing what to do is so difficult. The doctors at the Mayfield Clinic in Cincinnati, Dr. Pensak for one, have a wonderful reputation for AN surgery. They don't "advertise" or boast about their experience, they just quietly do it. They hosted the ANA Symposium 2 years ago.

I am from Northern KY, my sister still lives there, and I am now in Seattle. Because of my sister's after care, and the reputation of the folks at Mayfield Clinic, I had intended to go there for surgery, should I choose that treatment. (I'm still W & W, but probably not for much longer.)

Good luck to you and your daughter. Before you know it, she WILL be finishing her college work, and moving on to vet school....all of this being just a (kind of big) bump in her road.

Barbara
Feb. 2010    4 x 8 x 5mm
June 2011   4.7 x 8.9 x 4.0mm
May 2012    4.5 x 9.1 x 3.9mm
Sept. 2013   5 x 10.1 x 5mm
Feb. 2015     6 x 13 x 5 mm
In IAC near cochlea
Mild hearing loss, tinnitus
W & W, thinking about treatment

ANmom

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Re: Louisville, KY
« Reply #2 on: August 08, 2013, 08:38:26 pm »
Thank you so much, Barb909!  Nice to "meet" another Ky gal!

At this point in time we have had a consult with a local neurosurgeon, and are scheduled for consults at U of M and Vanderbilt.  It was a bit too much to try to squeeze in another consult at Cinci.  But I do so appreciate your insight!

I hope your W&W time exceeds your expectations and continues on and on....

And thank you for the kind words about my daughter.  I know you are right, and before we realize it, this will all be behind us...

Thank yo so very much!  I really appreciate your response!
ANmom/Juliet

areles

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Re: Louisville, KY
« Reply #3 on: March 04, 2016, 07:37:31 pm »
i know your post is a few years old, but as the mother of a 22 year old who on 2/22/16 went through translab surgery (and csf repair surgery four days later), i am interested in what happened with your daughter, how she's doing now, and how you're doing now.
22 y/o son:

2.8cm dx 12/31/15
translab (10 hours) at house clinic 2/23/16 - dr schwartz, dr miller
surgical repair of csf leak 2/27/16 - dr miller, dr chen
as of 2/28/16, still in hospital, with tentative release scheduled for 3/1/16
{indeed sprung 10:15a 3/1/16}

 


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