need statistics on AN doctors

[researcher]

Hi all! My specific question is::  How can I find out the number of AN surgeries are done by a particular doctor?

I tried calling neurosurgeons and the folks on the phone just say "the doctor does lots of AN removals". They want me to schedule an appointment to speak to the doctor. That's cool but I would like to find 3 neurosurgeons with a great deal of AN surgeries and make the appointments with them. Any ideas?

Background:: I have been diagnosed with an acoustic neuroma with dimensions of 15mm by 16mm by 14mm. I live in central FL and would like to find a surgeon in Florida.

Similar question would be:: If I were to look for a doctor that does radiation, how would I found out how many of those procedures he/she has done in the past?

[arizonajack]

I would think most doctors would be happy to provide their stats and AN specialists will often have stats on their website.

Or you can just google the name of the doctor and see what that tells you.

If a particular provider won't give you stats, find another.

Hang around here long enough and you'll likely get testimonials from our members.

Also check out the ANA pages on Medical Professionals:

https://www.anausa.org/resources/medical-resources

If a facility or doctor appears on those pages you'd likely be safe in relying on them.

There are both listed for Florida.

[ANGuy]

Many of the figures regarding number of surgeries I see posted on this board I simply don't believe.  They are at best exaggerated, at worst, they are dishonest.  Regardless of what anyone tells you, if a Dr. does 2 or 3 a month, that is a lot.  Keep in mind, there are only so many of these things diagnosed in a given time period and there are many providers that treat them.  Also, it's not like these Drs. only treat AN's.  They teach, do research, and do many other types of delicate surgeries.

[researcher]

Thank you for your replies.

I have been researching doctors on their websites. Looked up their malpractice claims. Looked to see if they are board-certified. Are they on my insurance? It's becoming a jumbled mess.

I will look up all of the surgeons at Uni of Miami and USF-Tampa. They were both listed on the ANA website. Thank you for the suggestion.

[mcrue]

To answer your specific question, and in the interest of saving you a lot of time, these are the 5 doctors you really need to know about:

Microsurgery:

Dr. Marc S. Schwartz - Los Angles House Ear Clinic Neurosurgeon
Dr. Rick Friedman - Keck Univ. in Los Angeles Neuro-Otolaryngologist

Radiation:

Dr. Steven D. Chang - Stanford Univ. Cyber Knife and Neurosurgeon
Dr. Lundsford - Pittsburgh, PA - Gamma Knife

Dr. Jay Loeffler - Massachusetts General Hospital - Boston - Proton Beam Therapy

There are plenty of other equally skilled and talented surgeons scattered throughout the country. When it comes to my brain I would travel to see the very best.  In my opinion, the doctors I listed appear to successfully treat the most Acoustic Neuromas per year with the best results. They will gladly provide you with their statistics so you can decide for yourself, and they even provide free phone consultations if you mail them your MRI and medical records.

Regardless of what anyone tells you, if a doctor only performs 2 or 3 Acoustic Neuroma surgeries per month that is hardly considered a lot of experience in my opinion. I would never have brain surgery from someone who only performs 2 acoustic neuroma surgeries per month. Would you have an oil change from a mechanic who only performs 2 or 3 oil changes per month, or would you be more comfortable with a specialist who does 500 per month?

The motto of this website and the Acoustic Neuroma foundation is to seek treatment from a surgeon with the most experience, who specializes in the specific treatment of acoustic neuromas, and who performs the most acoustic neuroma surgeries per year with the best outcomes.

[alabamajane]

Researcher,  welcome,,
First, sounds like you are off to a proactive approach to your  AN diagnosis,,, good for you! This will help you find the best Dr team for you and eventually you will be comfortable and confident in your very personal  decision. It IS ultimately up to you and your family to decide what is best for you.

The ANA site does provide a list of qualified Drs, but keep in mind the ANA does not endorse any Drs and these Drs have paid to be listed by donations or membership. But it is an excellent starting point with that in mind. There are MANY other qualified Drs out there.

If you are close to UF- Gainesville,, Dr. William Friedman practices there and they preform both surgery and radio surgery and also have started using Avastin as a medical treatment for ANs,, you can look on their website.  Not sure how close you are to that team. Just an option.

Good luck in your search. There are several Drs who will review your MRI CD and consult over the phone. House clinic  in LA, CA is one. This can be an invaluable asset and worth pursuing.
Let us know how it goes. Relax and don't get too overwhelmed researching!! There are plenty of options yet open to you.

Jane

[michellef08]

I second mncrue's comments. When I went to House 2.5 years ago Dr. Friedman and Dr. Schwartz were performing 2 AN surgeries A DAY, a couple days a week (I believe they had 2 or 3 set surgery days). I decided that this was my brain we were talking about, and I wouldn't trust anyone other than the very best. And I have to admit - it was the best decision I have ever made! They preserved my hearing, and I had zero balance or facial issues.

I actually had my surgery scheduled at Johns Hopkins since I live in the DC area, but upon further research, knew that traveling across the country would be worth it. I know they are world-renowed at most things, but they just simply couldn't compare to the experience that House had with our rare ANs.

[researcher]

I am burning dvds of my brain MRI for the House Clinic, et al.

Here's another question.

What was said to you that made you feel comfortable with the doctor that did your surgery/ radiation/ or watch and wait?

The obvious questions are::
Do the doctors give you your options and you quiz them about the risks and rewards?
Do they recommend a particular procedure?

But how did you decide what to do?

He said based on the placement of the tumor that middle fossa was out. He said I could watch and wait, do retrosigmoid approach (he could do that), or do fractionated radiation.

So is this what other doctors will tell me? All 3 approaches are great?

Love to hear your thoughts.

P.S. the Avastin approach will require more research on my part. Thanks for the info.

[CHD63]

Hi researcher .....

If you have not already done so, check out:  https://www.anausa.org/pretreatment/questions-for-your-physician

and https://www.anausa.org/pretreatment/questions-to-ask-yourself

Those questions are very helpful to print out and take to your doctor.  Any doctor "worth his/her salt" will spend time giving you your options and answers to all your questions.  If the doctor does not do that, quickly find another one.

The best and most experienced doctors treating ANs will be honest with you as to their opinion on your best options.  Many times, the doctor will leave it up to you to decide what feels right for you from the options.  It comes down to your own gut instinct sometimes, which can be frustrating, but really is best in the long run.

Many thoughts and prayers.

Clarice

[ANGuy]

So, doctors are claiming to perform over 600 an surgeries per year and yet there are only 3,000 in the whole country diagnosed.  Between those two Drs alone that is easily over 50% of the AN surgeries performed on a national level.  Since  a typical AN surgery takes about 8 hours, and these claims add up to 80 hours a week just for the surgery, let alone the reports they have to write, the new patient and follow up visits they must have, the general housekeeping that people of all professions must perform (even surgeons have to fill out a pay sheet and attend sexual harassment in the workplace training ).  This just doesn't add up.

[lisav]

Researcher..........I met with Dr. Agazzi, neurosurgeon, at USF Health and really liked him. I believe he said he does about 50 surgeries a year which is a lot considering the small amount of people who are diagnosed in Florida. He has done research, written papers, given talks, etc. so ANs are his specialty. I will be having surgery at Tampa General in either January or April depending on my MRI in January.  I have also read some great things about him from patients who had him as their neurosurgeon. 

Good luck.

[researcher]

Thanks to everyone who wrote to me. It has been a little scary. Just working through the emotions. I have been feeling "unsteady and dizzy" lately. It has been getting progressively worse. The room is not spinning though. Just feels very unsettling.

I don't know if that is the progression of the neuroma or not.

 


 

[Doc]

Think of it this way--approximately 20 out of one million people annually are diagnosed with an Acoustic Neuroma. Now consider the US population of 316 million. That equates to roughly 6,320 new patients a year. Of that number, probably 50~60% are automatically put in watch & wait status, which is a conservative guess at best. Another 40% elect GK or CK, leaving maybe 630 possible surgery’s to be performed annually. Now lets assume there are 1000 neurosurgeons in the country qualified to perform AN surgery. That’s not a very large patient pool, is it?

Remember, we’re talking specifically about Acoustic Neuroma’s. If you follow this model, you would more than likely look to places like House or John Hopkins for the best qualified surgeons.

Take Care

Doc

[researcher]

Hi all!   I have been in contact with the doctor and he recommends the retrosigmoid approach for my AN. He answered all of my questions.

Should I also send my MRI to House Clinic?

[Doc]

Definitely!