How find surgeon?

[lmpope6416]

I was diagnosed last week with a 2.4 AN.  The ENT doctor who did diagnosis recommended an ear surgeon in another office in his practice and I saw that surgeon today.  Because of size of AN, both he and original ENT recommend surgery and I've come to accept that.  He said he would do surgery with a neurosurgeon and gave me that doctor's name so I could get appointment with him.   I'm going to do that but I would like to talk with other doctors.  What is best way to find good AN surgeons in my area?  I live in NC and would prefer not to travel very far if I can find good, experienced surgeons in my area.

[Jim Scott]

Hi ~

There are many doctors who perform AN surgery.  I found one close to home (Connecticut) and had excellent results.

The ANA physician directory doesn't list any for North Carolina but this link offers a host of website links that will help you locate a doctor in your state  that performs AN surgery. http://find-physician.com/north-carolina.html

You may have to devote some time (and travel) to finding the 'right' doctor but I assure you, it is worth it.  The main criteria is that the physician you chose have extensive experience in AN surgery.  This is the recommendation of the ANA and I certainly concur.  My neurosurgeon had over 30 years of experience with AN removals and I was fully confident of his abilities.  He did not disappoint me. 

I hope this information is helpful.  Please try to keep us updated on your search.  Thanks.

Jim

[lmpope6416]

Thank you so much for this information.  It's a lot to go through.  I'm finding the information available is very limited and doesn't provide specifics on how many AN surgeries the doctor has done, so I've resorted to calling a few doctor's offices to ask their nurse some basic questions.
Besides local ear surgeon in Charlotte NC, my ENT had also recommended Dr. Kaylie at Duke.  I did search of the ANA discussion forum and have seen Dr. Kaylie's name mentioned but I learned he's only done 500 AN surgeries and I read somewhere in ANA recommending surgeon who has done at least 1000 of them.  Also, I did search on AMA for Dr. Kaylie and he is not an AMA member which seems strange to me.

I'm willing to travel, so will perhaps contact some doctors on ANA doctor list.  Wish there was a top 10 list somewhere as I'm finding it difficult to narrow down from amongst the many doctors.

[Little_Bear]

Yes, it takes some researching for peace of mind but well worth it.  I traveled from out of state, Spokane, Washington, to Los Angeles, California for surgery with Dr. Rick Friedman.   He moved on, after 15 years, from House Ear Clinic in Los Angeles, to become the Division Director of the Otology, Neurotology and Skull Base Surgery, AN Center, at Keck Medical Center of USC, in Los Angeles, and Co-Chair of the ANA Medical Advisory Board. If you forward him your MRI and report, he will be glad to do a free phone consultation that might give you some needed insight and comfort.  My AN was smaller, 4mm by 5mm, and my surgery on 12/10/13 was a success with 100 percent of my hearing and facial nerves preserved.  There is hope out there, you just have to keep inquiring. 

I understand you are looking for a surgeon located closer, but he is considered world renowned in treating AN's and people travel from near and far for surgery with him.  Attached is Dr. Friedman's link if you would like his address, and to do additional reading.

http://acousticneuroma.keckmedicine.org/

All the best of luck to you on your search for peace of mind with a surgeon.  Keep us posted.

Frankie

[leapyrtwins]

I agree with Jim completely - the ANA's list is a great place to start.

In addition, you might want to look into radiation.  Depending on the specific location of your AN, you might be a candidate.  Most docs will radiate an AN of 3 cm or less.

It's important to check out all your possible treatment options.  And, keep in mind that docs who recommend surgery typically do surgery; they may not mention radiation as an option because they may not personally do radiation.

Good luck!

Jan

[mandy721]

A good way to get information about doctors in your area is through a local support group. 
Here is contact information for the Durham group -

Leader: Stewart Binder
919-624-3256
bindersj@earthlink.net
 
Leader: Debbie Fletcher
919-471-4389
debfletch@yahoo.com
 
Co-Leader: Dr. Robert Hamer
919-593-1648
hamer@unc.edu

[Hokiegal]

I was diagnosed in 2011 with a 3.0 cm AN.  My local neurosurgeon (Greenville,Sc) declined the surgery, insisting I see someone with extensive AN experience.  He gave me two recommendations-- one is head of Neuro at Duke, the other is head of neuro at MUSC.  I opted for MUSC and received excellent care.  However, as someone mentioned, the local support groups can also provide information.  I was eager to remain close to home, but many others have flown without issue.  Hope this helps!

[cpchri1]

I'm going to agree with Little_Bear (a.k.a. Frankie).  I live pretty close to Spokane.  Actually the Tri-Cities in Eastern Washington, about 2-1/2 hours away from Spokane.  And I also traveled to Los Angeles in February 2014 for a successful middle fossa approach vestibular neuroma removal by Dr. Goddard and Dr. Lekovic at House Clinic.  They are experts (An AN isn't something you want anybody that isn't an expert at).  It's REALLY worth the trip!  Were talking about your life and the quality of your life.  Yeah it's a pain but what's your life worth and a little inconvenience?  I really enjoyed (seriously) being at a House - a world class place.  I'm sure Dr. Rick Friedman is of similar high quality based on his CV and what I have read about him.  In fact I purchased this medical book he was the Editor on about all the House Base Skull Surgeries on amazon (although it's written for MD's it helped me ask a lot of technical questions):

http://www.amazon.com/Lateral-Skull-Base-Surgery-Clinic/dp/1604067640/ref=sr_1_5?s=books&ie=UTF8&qid=1396410067&sr=1-5

These doctors listen to you and they actually care about you as a person.  I'm 53 years old and never met any body like this in the medical field.  In addition to Dr. Friedman you can also get a free consultation from House Clinic at:

http://www.houseearclinic.com/consultation/acousticneuroma

I'm very glad I did this consultation.  There are people that can help you!

Anyway the best of luck to you and I was happy to hear about you Frankie (being so close to my part of the State of Washington).

[Heresrose]

Yes, please also research and consider radiation (gamma knife, Cyberknife, proton therapy) before you sign up for surgery.