Author Topic: new with AN  (Read 4064 times)

Nela617

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new with AN
« on: August 07, 2013, 11:56:32 am »
I have been recently diagnosed with AN and having a tough time deciding what to do.  My Dr. does not want me to have the surgery but I'm miserable with the noises in my ear and headhaches.  Does anyone know of an excellent Dr. in Connecticut that I might get a 2nd opponion.

jamssp

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Re: new with AN
« Reply #1 on: August 08, 2013, 09:55:42 am »
Although I did not ultimately choose this team (I went to Sloan Kettering in NYC) I was very impressed with Drs. Joseph Piepmier and John Kveton at Yale.  Depending on where you are in CT, I would highly suggest you get opinions from some of the excellent teams in NY--Gutin/Selesnick (who I used), Roland/Golfinos at NYU or Dr Sisti at Columbia.  (These are all surgeons and you'll want to check out radiation as a choice, too.) There is a lot of expertise in our area! :)

Mary
2 cm AN, Translab March 2013, Dr's. Gutin & Selesnick, Memorial Sloan Kettering, NY.
SSD but otherwise doing great!

mesafinn

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Re: new with AN
« Reply #2 on: August 08, 2013, 11:41:22 am »
Sorry to read about your diagnosis, but you will find a lot of support here.  Keep doing your research and thinking and take care of yourself!

If you want to proceed with a GK consultation, you have one of the best in your backyard:

Douglas Kondziolka, MD, MSc ,FRCSC, FACS
Professor of Neurosurgery
Vice-Chair, Clinical Research (Neurosurgery)
Professor of Radiation Oncology
Director, Center for Advanced Radiosurgery
NYU Langone Medical Center
(212) 263-0095

douglas.kondziolka@nyumc.org
530 First Avenue, Suite 8R
NYU Langone Medical Center
New York, NY, 10016
Oct 2012:  Constant Pulsatile Tinnitus
Feb 28, 2013: Dx AN 1.4 cm X .9 mm
April 19, 2013:  GK at UPMC w/Dr. Lunsford

Some things in my life need to matter less, and other things in my life need to matter more.  So yes, I'm taking this as a "lesson learned experience."

Chances3

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Re: new with AN
« Reply #3 on: August 08, 2013, 11:44:49 am »
Hi Nela617,

I'm sorry to hear about your AN, but welcome to this site.  You didn't mention why your doctor is against surgery?  Do you have other health issues that does not make you a good candidate for surgery ?  Unfortunately the noise you are experiencing might not go away, no matter what type of procedure you chose - Radiation or Surgery.  From what I have been told, and have read, a AN affects our hearing, which means the brain compensates for the loss of sound by creating it's own sound.  Obviously I'm not a doctor, but this is one of the causes of sound in our head.  For many of us, it is referred to as Tinnitus, or many of us suffer from Menieres disease as well, along with having a AN.  Joy Joy :(

My advice - which is totally free ( lol ) - compliments of ANA.  Please learn as much as you can, research research research, before you make any decisions about how you will deal with this AN.  By learning a great deal, you can make the very best choice that works for you, and that you can be comfortable with for the rest of your life.  This site is an excellent resource in addition to the world wide web.  Also have a look at ATA.ORG, that is the American Tinnitus Association to learn more about your noises.

You definitely need another opinion.  I also suggest you come to NYC and meet one of the highly trained and experienced doctors in this field.  I had my AN surgically removed by Dr's. Roland and Golfinos at NYU Langone Medical Center.  They both chair their respective departments, and are very experience.  Dr. Golfinos does radiation as well if you decide against surgery, but it is worth meeting them.  My son's business associates's daughter had her AN removed from Dr. Sisti - they were also happy with their outcome.

I hope this helps, stay connect here, and ask/post as much as you want or need to, someone will reply.

It is what it is

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Re: new with AN
« Reply #4 on: August 08, 2013, 01:23:31 pm »
Hi,

I also welcome you to the list.  If you want free consultations with some of the best AN docs, House Ear Institute in L.A. and Dr. Chang at Stanford will look at your MRI and give you free telephone consultations even if you do not choose to have your treatment with them.  (I had middle fossa with HEI surgeons one year ago.)

Sending you caring thoughts,

karen
.7cm, left side AN , Tinnitus, Hearing preserved, Middle Fossa 8/1/12 at HEI, Drs Friedman and Schwartz, Sharing your story is extremely helpful to me.

Jim Scott

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Re: new with AN
« Reply #5 on: August 08, 2013, 02:08:45 pm »
Hi, Neela ~

Your post raises the inevitable question of what size is your AN?  If your doctor is advising against surgery I'm guessing that it is relatively small. 

I live in northwestern Connecticut and my neurosurgeons were Dr. Isaac Goodrich and Dr. Judith Gorelick who are affiliated with Connecticut Neuroscience in New Haven.  http://www.ctneuroscience.com/index.html

My radiation oncologist was Dr. Johnathan Haas, who is now practicing in Mineola (Long Island) New York.  http://www.winthrop-radiology.com/wra_physicians/jonathan_haas.html

Doctors Goodrich and Gorelick were excellent neurosurgeons and did a fine job (I had no post-op complications) but were also caring and compassionate.  I had been told that Dr. Goodrich had retired but he is still listed on the updated Connecticut Neuroscience website.  Dr. Gorelick is a very distinguished neurosurgeon and I highly recommend both.  I'm sure one or both would be glad to offer you a second opinion. 

Although Dr. Haas has relocated (from Connecticut to Long Island) I also recommend him if you decide to undergo radiation - with the understanding that his location may not make him a feasible choice for you.

I trust this information is of some help to you as you struggle with making a treatment decision for your AN.

Jim

4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

nftwoed

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Re: new with AN
« Reply #6 on: August 08, 2013, 08:24:23 pm »
Hi;
   You wrote: "My advice - which is totally free ( lol )". No thanks, if you are "Chances3".  ;)


Hi Nela617,

I'm sorry to hear about your AN, but welcome to this site.  You didn't mention why your doctor is against surgery?  Do you have other health issues that does not make you a good candidate for surgery ?  Unfortunately the noise you are experiencing might not go away, no matter what type of procedure you chose - Radiation or Surgery.  From what I have been told, and have read, a AN affects our hearing, which means the brain compensates for the loss of sound by creating it's own sound.  Obviously I'm not a doctor, but this is one of the causes of sound in our head.  For many of us, it is referred to as Tinnitus, or many of us suffer from Menieres disease as well, along with having a AN.  Joy Joy :(

My advice - which is totally free ( lol ) - compliments of ANA.  Please learn as much as you can, research research research, before you make any decisions about how you will deal with this AN.  By learning a great deal, you can make the very best choice that works for you, and that you can be comfortable with for the rest of your life.  This site is an excellent resource in addition to the world wide web.  Also have a look at ATA.ORG, that is the American Tinnitus Association to learn more about your noises.

You definitely need another opinion.  I also suggest you come to NYC and meet one of the highly trained and experienced doctors in this field.  I had my AN surgically removed by Dr's. Roland and Golfinos at NYU Langone Medical Center.  They both chair their respective departments, and are very experience.  Dr. Golfinos does radiation as well if you decide against surgery, but it is worth meeting them.  My son's business associates's daughter had her AN removed from Dr. Sisti - they were also happy with their outcome.

I hope this helps, stay connect here, and ask/post as much as you want or need to, someone will reply.

 


anything