Author Topic: Greetings from Newbie on Long Island  (Read 6845 times)

edhayes

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Re: Greetings from Newbie on Long Island
« Reply #15 on: January 01, 2009, 12:16:35 pm »
Where will the info be posted on the get-together.
I also live on Long Island and would love to attend.


Neal,

There's going to be a lunch get-together for New York area ANers on Saturday, January 10 (place to be determined, but will be near Penn Station, etc.), and it would be great if you could join us. You'll meet people who've had a variety of AN experiences and, hopefully, get some questions answered and feel more positive about the AN journey. For more information go to the AN Community section of the Forum, and look on page two of the topics -- "New York Area ANers" is the one to click on. (I'm not computer-savy enough to provide you with a direct link here -- sorry). Debbi and Wendy are the organizers and I imagine they'll be giving us some more information soon.

Sounds as though you're doing all the "right things" regarding research, etc.

Catherine (JerseyGirl2)

highlife

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Re: Great article!
« Reply #16 on: January 01, 2009, 04:15:12 pm »
Sue:
Wow, that article sure explains a lot.  I told my doc that I don't like my diagnosis much, but I know at least that I'm not some neurotic hypochondriac nutcase.  My experience is that others don't really believe me.  I mean, how could a one cm non-malignant tumor cause so much trouble?  Whoever wrote the article has sure got it right.  Thanks.
Steph
Rt ear AN - 10x6x4mm
dx 9/08
wait

wendysig

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Re: Greetings from Newbie on Long Island
« Reply #17 on: January 04, 2009, 06:01:17 pm »
Hi Neal and welcome to our group -

I'm glad you found us -- I think you will find this forum to be a wonderful source of information, comfort and a great place to rant when you need to.  Those of us who have been treated have been where you now are and everyone understands what you are going through.  I had my surgery at Mount Sinai in July and hope you don't mind my asking who you are seeing there.  Although I didn't have him perform my surgery (I was already quite happy with the doctor who eventually did perform my surgery)  I had a consultation with Dr. Eric Smouha(Direcctor of Otolaryngology)  whom I found very impressive.   My experience at Mount Sinai was very positive from beginnning to end and if you have any questions about doctors or anything else there I'll do my best to answer them.  My neurotologist is  Dr. Won-Taek Choe, a truly gifted, compassionate and amazingly wonderul  physician, my neurosurgeon is Dr. Chun Chen -- another  gifted and wonderful surgeon.  I had a great outome, which of course, no one can guarantee, but I am sure was due to the skill of my surgeons.  Please feel free to contact  me with any questions.

Best wishes,
Wendy
1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!

nteeman

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Re: Greetings from Newbie on Long Island
« Reply #18 on: January 05, 2009, 12:54:55 pm »
OK, just got back from seeing Dr. Bederson at Mt.Sinai and at first glance at my MRI said it is not an AN but a Meningioma.  He also said it was too big for radiation and recommended surgery--sooner than later. He is going to show my MRI to the Radiology dept to see if they agree and will let me know.  I was very impressed with him and felt confident that he could do the job well.

For now, I intend  to do more research and think about it.

Any advice is welcome.

Neal
Diagnosed 12/16/2008
AN 2.4 X 2.0 X 1.6 CM
surgery performed on 1/27/2009 Mt. Sinai Hospital, NYC
Dr.Bederson & Dr. Smouha
9:30am thru 5:50pm
http://www.facebook.com/neal.teeman

MAlegant

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Re: Greetings from Newbie on Long Island
« Reply #19 on: January 05, 2009, 05:26:01 pm »
Hi Neal,
Is that a first or second opinion?  I got three opinions, from very fine doctors and I was fortunate that they all agreed.  Two out of three specialized in skull-base tumors (like AN's) so I went with the team that I felt most comfortable with. There were also folks on this site that knew my doctors and they all had positive things to say.  Good luck with all of this; I know how stressful it is.
Best,
Marci
3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.

leapyrtwins

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Re: Greetings from Newbie on Long Island
« Reply #20 on: January 05, 2009, 05:53:20 pm »
I was very impressed with him and felt confident that he could do the job well.


Neal -

IMO this is a very good thing.  There's nothing wrong with getting second or third opinions, but confidence in a doctor is something to strive for.

Having confidence in my docs made my surgical experience that much better - I quite literally couldn't have done it without them  ;)  :D

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

wendysig

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Re: Greetings from Newbie on Long Island
« Reply #21 on: January 07, 2009, 05:18:49 pm »
Hi Neal,

I just caught up on this thread and am glad you got a good feeliing from Dr. Bederson -- in my opinion he is one of the best.  Doing research is always a good idea and so is getting other opinions.  Please let us know when you hear from him again and what he has to say, as well as any other opinions you get. 

Best wishes,
Wendy
1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!

marymomof3

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Re: Greetings from Newbie on Long Island
« Reply #22 on: January 07, 2009, 09:36:15 pm »
Hi Neal.  I live on Long Island as well.  Welcome to the forum.  I was diagnosed about a year ago...  and sometimes the whole experience still feels surreal.  Looks like your taking all the right steps. 

Anway, there are a lot of great doctors you could meet with in the city.  I selected Drs. Roland and Golfinos at NYU.  I am happy to share me experience if you want to talk.   
Diagnosed Jan 21, 2008 w/1.8CM AN on left side.  Had is removed on March 19th at NYU.  And I am super grateful for such wonderful doctors!!

Pooter

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Re: Greetings from Newbie on Long Island
« Reply #23 on: January 08, 2009, 12:50:39 pm »
Neal,

MsMaggie recently had surgery to remove a mengioma (it wasn't clear ahead of time whether it was a mengioma or an acoustic neuroma before surgery).  The options for treatment are basically the same.  MsMaggie's surgery was about 4-5 hours (if memory serves) and I last saw her about 2 weeks post-surgery and she doesn't look at ALL like she just had brain surgery.

I would definitely get other opinions about treatment options available to you.  Experience has shows us all collectively that surgeons will suggest surgery and those that do radiation will suggest radiation (they're in business afterall).  We have also learned that those that do both will give an impartial answer most of the time.  Get a second and third opinion.  Seek information from both kinds of doctors.  Most of all, use this forum as a place to ask questions of those who've been where you are.  The collective wealth of knowledge of those that frequent these forums cannot be matched from what I've seen.  We're all different and have different journeys and stories to tell.  If there's a "new" symptom, then someone here has seen it too.  If there's an insurance question, others here have had that question too.  We all learn from each other.  And, we like to have as much fun as possible given the circumstances along the way.  A true journey.

Welcome to the forum.  Since everything about a mengioma from a symptom and treatment is very similar to an acoustic neuroma, you're welcome to stay and learn all you can.  Ask questions.  Get answers.  Help others.  That's what we do here.  Welcome to our little club.

Regards,
Brian
Diagnosed 4/10/08 - 3cm Right AN
12hr retrosig 5/8/08 w/Drs Vrabec and Trask in Houston, Tx
Some facial paralysis post-op but most movement is back, some tinitus.  SSD on right.
Story documented here:  http://briansbrainbooger.blogspot.com/

"I must be having fun all wrong!"  - Roger Creager

 


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