Just Diagnosed

[pjk]

I was just diagnosed in the last couple of days w/ a 3.7cm AN. I know that is a fairly large AN, and will most likely require surgery in the next month or two. I am aware of the risks w/ my surgery regarding possible permanent hearing loss and facial paralysis. Also I am 42 years old.

This website has been very informative and I thought I inquire of others for additional knowledge and resources.

I actually feel pretty good w/ the only symptoms being ear ringing (which I have had for years but didn't think it was anything), hearing loss (confirmed a few weeks ago) and slight disorientation when I move my head quickly. I am in very good health otherwise and exercise regularly. In addition I actually know a person who has had AN surgery about 7 years ago. I have not meant w/ any neurosurgeons or other specialists other than my ear, nose and throat guy who diagnosed the condition. I live in Philadelphia and I am looking for input and recommendations for surgeons / doctors. My friend had his AN surgery at John Hopkins and is going to try and get me introduced to them ASAP. I have an appointment next week w/ the University of Penn team.  I also hear Thomas Jefferson is very good w/ AN surgery in Philly. Any input regarding these 3 would be very helpful, especially Penn since they will be the first group to examine me. Of course any other insights would be helpful to.

Thanks, Phil

[Kaybo]

Phil~
I don't have any input on any of the Dr.'s (except I had some reconstructive surgery at JH last spring and LOVED it there) as I am from Texas!  Sorry that you have an AN, but glad you found your way here.  This is a great site with a LOT of people that are willing to help you thru everything - & more importantly, KNOW what you are thinking and feeling.  Please use us to answer any questions that we can!

K

[leapyrtwins]

Hi, Phil -

sorry you have an AN; glad you found us.

Ironically I just got an email yesterday from a newbie named Ron who is in PA.   He got my contact information from the ANA - I'm on the WTT (willing to talk) list.

Ron told me he has an upcoming appointment with Dr. Willcox at Jefferson Hospital in Philadelphia.  He also tells me that Dr. Willcox meets all the criteria that the ANA recommends patients look for in a doctor.

I noticed that your email address is listed on your user profile.  Would you object to me giving Ron your email address?  Although his AN is only 1.4 cm, you two might be very good resources for each other.  If you'd rather I didn't, I understand.

As you mention, with an AN of 3.7 cm you are most likely a surgical candidate (as opposed to a radiation candidate) but rest assured that surgery isn't the end of the world.  There are risk and side-effects, but most of them are not insurmountable.  You'll get through it and we'll be here to help in any way we can.

Happy New Year,

Jan

[BigSister]

Hi Phil,

I was diagnosed with a AN about 6 months ago.  I have been to see Dr. Douglas Bigelow and Dr. Kevin Judy at the University of Penn.  My sister, SueBoo73 has been to Johns Hopkins and University of VA (because of her location).  I don't know who you will be seeing on your trip to University of Penn, but I would be glad to discuss my meetings with these doctors.  At this time I have elected to watch and wait, even though my AN is over 2cm and have a followup visit scheduled for next August, unless I decide to treat this sooner.

My best advice, take along one or two other people to listen to what is being said and/or to take notes.  They are very good at UOP and Dr. Judy didn't even flinch when 3 of us showed up for his consultation (me, my husband and my daughter).

So contact me if you would like to blog/chat or whatever it is called about my exchanges with the doctors.

Good Luck with your appointments!

April

[MAlegant]

Hi Phil and welcome,
My tumor was pretty large as well and I'm doing fine, as are many on this forum.  Although I'm originally from Philly, I don't have any recs for you.  However, I totally concur with April that you should have someone with you at all of your appointments--just to hear what you might miss, or ask questions that you might forget to ask.  Best of luck and keep posting.
Marci

[texsooner]

Phil, sorry to hear you've got an AN, but you've found a good place for info and support. I can't really help you too much with doctors in your area of the country, but wanted to give you testimony from someone who came through a surgery in pretty good shape with only minor issues(relative to some others on this forum). My AN was about the same size as yours. The surgery was long, but successful.

I'm a few more years senior than you and also exercise regularly. I would encourage you to keep that up before and after your treatment, as I strongly believe it helps in the quality and speed of recovery. Good luck and keep in touch.

Patrick

[nteeman]

Phil,

I just got diagnosed too, (12-16-08) so I know exactly how you are feeling. I have been researching AN like crazy and have got a good idea of the pros and cons of each type of treatment approach but I don't want to make up my mind until I consult with a few Docs.  I have experienced a lot of mood swings and I have found this forum a very comforting source of information and good cheer from the attitude of others who have 'gone the road I am about to travel.' It is definitely a turn in the road of life for me, a personal Black Swan (for those who have read Nassim Taleb).

I wish you good luck and I am sure you will find much good advice here on this forum.

Cheers,
Neal

[suboo73]

Phil, 

Sorry about your dx, but so glad you have found this group, they are wonderful!
I don't have information on the docs in Philadelphia area, but i see that Bigsister (yes, my real big sister!) has already posted some information for you.
(Yes, we both have ANs - isn't that strange?  I would never have gone for a 'second opinion' had it not been for my sister.)

I have appointments with Drs. Tamargo & Francis in Jan. 09.  Dr. T. is a surgeon at Hopkins and several others on this forum have been treated by him, including Tricia (staypoz).

I started this whole process at UVA, but don't feel i have all the answers yet.  You sound like you are doing your research and asking good questions.
Good luck in future with your research and treatment decisions.

Sincerely,
Sue

[msmaggie]

Hi Phil,
Sorry you were diagnosed with an AN, but you ended up here and that is a good thing.  Your tumor is on the large side, but there are plenty of people here who have been successfully treated for large ANs.  You need to do your homework--read everything you can get your hands on and have several drs. look at your MRI.  The choice of treatment is the hardest part.  Once that is done then you are ready to move forward.

The folks here are encouraging, loyal, and incredibly supportive, as I know you have already discovered!  Ask any questions that occur to you and someone will either have the answer or know who does.
Keep in touch!

Priscilla

[Debbi]

Hi Phil-

And, a slightly belated welcome to our strange little world.  It sounds like you've got a few leads on some qualified surgeons in your area; however, if you find that venturing to the NYC area for surgery is an option, I can recomend the Golfinos/Roland team at NYU.  They did my surgery in April of last year and I am doing well.  This is the diagnosis no one wants and most of us were totally unprepared for - however, at least you live in a part of the world with excellent health care. 

Let us know how you are doing, and feel free to ask any questions along the way.

Debbi