Recently Diagnosed With AN In North Carolina

[JoeyC]

My wife has just recently been diagnosed with AN last week.  Surgery has been recommended by her initial doctor due to age(54) and size.  The doctor recommended a couple of surgeons, one at Wake Forest Baptist and the other at Duke University Medical.  We are hoping that someone has had experience with a surgeon at either Wake or Duke and could give us a recommendation. 

[ANGuy]

I have not had surgery as I am doing the observation thing for now.  I am seeing Dr. David M. Kaylie at Duke.  While I can't speak to his surgical ability, I am confident in his abilities based on my several visits with him and his background.  He does both conventional surgery and radiosurgery so he can give you good advice on either one.

Also, what I like about him, is that he is not rigid in his approach to my condition.  Initially, he thought observation was a mistake on my part.  His position was, basically, that I will need surgery at some point due to being relatively young.  From a statistical standpoint, it is pretty certain that my tumor will grow at some point, so there was no real point in putting off the inevitable.  He wasn't trying to cram this down my throat, he just was giving his professional opinion since I asked him for it.  At my next followup, and after a few more tests, he told me that based on my current lack of severe symptoms, and other factors including test results, that observation, for me, wasn't such a bad idea.  So, I like the fact that he applies the conditions of the specific patient to his recommendation. 

http://otolaryngology.surgery.duke.edu/faculty/details/0466347

[ANGuy]

A couple of videos of Dr Kaylie:

https://www.youtube.com/watch?v=UZ9Lt5kSJYM

https://www.youtube.com/watch?v=ygtSalEaC7A

[JoeyC]

Thanks, ANGuy.  We have looked at Dr. Kaylie's profile and will add him to our list.  Very difficult not having any knowledge of this condition until last week.  Kinda blindsided us as well as scared both of us to death.  Hopefully, we will have some more responses to our request as we attempt to gain knowledge of this condition.

[OneHourVideo]

JoeyC,

I was diagnosed just before my 50th birthday on February 12, 2015 and I know how you feel. I had surgery to remove a 2.5 cm AN on March 16, 2015 at Presbyterian Hospital in Charlotte, NC (the neurosurgeon was Dr. Craig A. VanDerVeer, MD and ENT surgeon Dr. Stephen Gold). My sister is an emergency room physician in Charlotte for 25 years and Dr. VanDerVeer came highly recommended. 

I had 50% left sided hearing loss for many years. The only other symptom I had--and the one that tipped my primary care physician off--was ringing in my ears prior to diagnosis. Tumor was totally removed (except for a small portion near the brain-stem, it appears!), and I had no health complications whatsoever, but my facial palsy has persisted for 4 months. However, He cut my hearing nerve, therefore, I lost my hearing in my left ear, but I have cross-hearing aides which are such a blessing. So, I had an EMG today (8/11/2015) to determine if I had any facial nerve function and it appears not. My neurosurgeon said that my facial nerve wasn't cut, just stretched out to the point that recover is highly unlikely, therefore, I am going to have a 7-12 anastomosis, which will potentially improve my facial symmetry at rest and hopefully regain some facial movement in the future (approximately 12-18 months).  In addition to freeing me of a lopsided smile!

I am sure there are many neurosurgeon that are great, but I know that Dr. Craig A. VanDerVeer does 25 plus AN every year. I did as much research as possible and feel like in this region he is the man. The company that he works for is Carolina NeuroSurgery & Spine Associates and Dr. Steven R. Gold (ENT Surgeon) links are below.

Dr. Craig A. VanDerVeer (Neurosurgeon)
http://www.cnsa.com/physicians/vanderveer.html

Dr. Steven R. Gold (ENT Surgeon)
http://www.ceenta.com/providers/gold/

Please let me know if you have any questions I can answer, however, this website is a wealth of information.

I will be praying for your wife.

Chris

[mcrue]

If you can afford a plane ticket and hotel stay, there's nothing stopping you from traveling out of state if your insurance covers it.

According to what I've read on this forum, some of the worlds best and most experienced surgeons are at USC or the House Clinic in California. It all depends on what your comfort level is regarding "experience."

If it were my brain, I would want someone who performs the most frequent and successful acoustic neuroma procedures annually. Other people are perfectly comfortable with a reputable surgeon locally who performs one or two a month. There are no guarantees either way.

In California, they both offer free evaluations of your MRI and medical records if you're interested.

Best wishes.

[Circusnole]

I felt the same way you did when I found out about my AN as well. I would imagine almost everyone had those same feelings of being blindsided and scared, its just natural. The best advice I had was from a friend of mine who I used to coach against and actually had the exact same thing 6 years prior (so much for those odds of 2 in 100,000....I guess we were the two from our area!). He said not to worry about who you upset (cause a lot of people will tell you what they think you should do), You need to research and go to the best place you can find, and you are comfortable with, don't let geography limit you to your search. Its your brain, make it your pick. That being said, you will now go through several options of Dr's and locations and you'll flip back and forth several times until you actually talk too them and set a date to meet and do the procedure. Use this forum as one of your resources and make the choice YOU are happy with.
By the way, I followed my friends advice and footsteps and chose Dr. Schwartz and Slattery at House Ear out in LA. No regrets and great outcome. Its definitely worth to see if your insurance includes them. Good luck with everything!!!

P.S. I'm from Georgia so it was a little trip to make it to Los Angeles, but it was worth it

[arizonajack]

My wife has just recently been diagnosed with AN last week.  Surgery has been recommended by her initial doctor due to age(54) and size.

What are the AN's dimensions and her symptoms?

[JoeyC]

Thanks for all your help and suggestions.  We have an appointment with Dr. Cunningham from Duke Medical on September 11 and hopefully will know more information about our future.  According to my wife, the size of AN extracranial(ice cream as we call it) is 16 x 20 x 19 and the intracranial(ice cream cone) is 5 x 5 x 7.  We don't know is this is the right explanation of the size, but that is the info she was given. 

[JoeyC]

We have set the date for surgery for October 19 at Duke Medical Center in Raleigh, NC.  The doctors will be Cunningham and Fukushima.  Please wish us luck and pray everything will turn out perfect. 

[ANGuy]

Luck and prayers headed your way!