Author Topic: Follow Up new Dr needed-Charlotte NC area  (Read 2673 times)

Lizard

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Follow Up new Dr needed-Charlotte NC area
« on: April 21, 2015, 12:46:10 pm »
Hey y'all!  Some of you probably remember me...I peek from time to time and still answer the PM's that come my way. 
Life is good... :D
Long story short, I'm in the Charlotte NC area now after transferring here from CT in late 2013 and I need to have a follow-up this fall.  7 years, can you believe it?!?!
I went online looking for a good neuro, but there just seem to be so many.  Is anyone from this area that could hook me up with a recommendation?
Thank you so much!
Liz
Left AN 2.5CM,retrosigmoid 11/2008, second surgery to repair CSF leak. 
Headaches began immediately.  Dr. Ducic occipital nerve resection, December 2011!!!!!

"When you come to the end of your rope, tie a knot and hang on"
-Franklin D. Roosevelt

ANGuy

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Re: Follow Up new Dr needed-Charlotte NC area
« Reply #1 on: April 21, 2015, 02:49:40 pm »
I am in the Charlotte area as well.  I started out with Charlotte EENT associates.  They are a huge practice with several locations all over the area.  I didn't know I had an AN when I started with them.  I can't say anything bad about them.  They started the investigation at the beginning, and as it lead from what I thought was E-tube dysfunction, to their first educated guess, Meniere's, and ultimately ended with the MRI showing an AN.  All of this took only a few weeks.  As things progressed, they moved me to different ENT's in their practice that specialized in where things looked to be going.

This is all good as they don't stand on any protocols where they are reluctant to step on another Dr's toes.  If they had someone who was better for Meniere's, they send me to him, then when the MRI showed AN, they sent me to that Dr.  They also were quick to order the MRI, which was smart, to rule out an AN, which of course it didn't.

So, again, I can't say anything bad about the 3 or 4 Drs. there I met with, or the overall way they ran everything.  They followed a logical series of steps that in a relatively short time found the correct answer.

Also, they were never rude or disinterested.  They understood my symptoms, and never gave me any of that "It's in your head" stuff that some of our group have run into in other places around the country and world.  They were efficient and courteous and effective.

By now you are realizing that there is a "but" coming in my post.  The issue I had with the practice was that I am pre-surgery.  I need a practice that I am confident can some day cut my head open and get it right.  A practice that does this often and is experienced.  For me, I didn't see how a place that really only caters to the local area could have that many AN's to work with.  I researched Duke. 

At Duke, I found a place that people from all over the world come to for surgeries just like ours, or very similar.  People like Ted Kennedy and the owner of the NY Giants, Preston Robert Tisch and others who could go anywhere in the world, went to the same place I go now.

You and I are in different situations.  You don't need something as complex as I will down the road.  You just need someone to check up on your MRI's.  I think Charlotte EENT would be very convenient for you no matter where you are in the area.  The worst I could say about them was I felt it was assembly line-like and that from a numerical standpoint, they just didn't have the opportunities to get the experience under their belt for complex nuero-surgery.

But, Duke is only 1.5 hours from where I am on the north side of town.  For someone like you, who would only need to go there once or twice to establish a relationship and then an occasional MRI, a 3 hour round trip probably shouldn't be a problem either.

My Dr at Duke is David M. Kaylie.  I can't vouch for his surgery since I haven't had any.  But, his staff and he are very responsive.  He is highly experienced with AN's.  I also click with his personality.  I am a Yankee.  I like straight talk.  He is from Connecticut like you.  His cousins grew up in the town I grew up in.  The Southern way is great for many things.  But when it comes to a tumor growing near my brain, I like dealing with someone that speaks the "same language" as me.  When he is in the room, you have his complete attention. 

Anyway, these are things I like about him.  Some of them are tangible, like the experience and the scope of the research that he does there.  I was tested on a new ABR test which wasn't of particualr benefit to me, but it shows that they are always comeing up with new things there.  Other things I like about him are subjective. 

PM me if you want as I'd love to speak to someone local who has been through what I will be through and maybe I can articulate my opinion on the local talent here a little bit more clearly on the phone.  If the phone is no good for you, that is fine as well.

Welcome to Charlotte!
Diagnosed June 2014 1cm AN at 47 years of age.  Had fluctuating symptoms since 2006.    6 mos MRI (Dec 2014) showed no growth, MRI  in July 2015 showed no growth.  MRI Jan 2016 showed no growth.  MRI Aug 2016 showed no growth.  I'm gonna ride the WW train as long as I can.

Lizard

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Re: Follow Up new Dr needed-Charlotte NC area
« Reply #2 on: May 01, 2015, 08:17:16 am »
Thanks so much for the response, just what I was looking for. Was considering Charlotte EENT and after going through the surgery its extreemely important I have the absolute best in the area looking after me. I know Duke is wonderful, and Dr. Friedman of course has quite the reputation around this site.  I think it is worth it to make the drive up there because if I ever had a re-occurance or further complications (I was on the brain wreck bus for 3 years following surgery) I want to make sure I have an established relationship with a great practice.
Thank you again, I really appreciate it!

I love Charlotte well all but the traffic  :)
Left AN 2.5CM,retrosigmoid 11/2008, second surgery to repair CSF leak. 
Headaches began immediately.  Dr. Ducic occipital nerve resection, December 2011!!!!!

"When you come to the end of your rope, tie a knot and hang on"
-Franklin D. Roosevelt

CHD63

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Re: Follow Up new Dr needed-Charlotte NC area
« Reply #3 on: May 01, 2015, 01:20:27 pm »
Just to be clear, there are several Dr. Friedman's in the country who do brain surgeries (at USC in LA, Duke in NC, and UF in Gainesville ..... to name three).  Dr. Friedman at Duke is well-known as an excellent brain neurosurgeon (famously he did the Ted Kennedy surgery), but his specialty is not in removing acoustic neuromas.

Just be sure you know the difference between experienced AN surgeons and experienced brain tumor surgeons.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

 


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