Author Topic: I have my approach -- just waiting for a date  (Read 13366 times)

Debbi

  • Hero Member
  • *****
  • Posts: 1921
  • Originator of the Magic Scarf
    • Debbi's AN Blog
Re: I have my approach -- just waiting for a date
« Reply #45 on: June 09, 2008, 07:57:06 am »
Hi Alll-

Maybe we could meet up in the City for lunch??  I am about 90 minutes away (sometimes less, depending on how the traffic Gods are feeling)  It would be SO much fun to meet eveyrone!!  We could show off our scars, bahas (for you lucky dogs who have them) and just get silly (not much of a trip for some of us...)  As a former Manhattanite, I could probably recommend something easy and central for lunch (really no such thing as "cheap" in Manhattan, but we can keep it reasonable...)

Oh, I'm liking this idea!!!

Debbi
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

jerseygirl

  • Hero Member
  • *****
  • Posts: 801
Re: I have my approach -- just waiting for a date
« Reply #46 on: June 09, 2008, 08:36:11 am »
Debbi,

Sounds great! Let's just wait until this heat wave is over! By the way, I plan to show off my Transear. I hope you are Ok with that! ;D

                  Eve
Right side AN (6x3x3 cm) removed in 1988 by Drs. Benjamin & Cohen at NYU (16 hrs); nerves involved III - XII.
Regrowth at the brainstem 2.5 cm removed by Dr.Shahinian in 4 hrs at SBI (hopefully, this time forever); nerves involved IV - X with VIII missing. No facial or swallowing issues.

lori67

  • Hero Member
  • *****
  • Posts: 3113
Re: I have my approach -- just waiting for a date
« Reply #47 on: June 09, 2008, 09:46:37 am »
Oh, Eve, you showoff, you!   :D

Jan, if your brother is in NJ and doesn't drive fast, then I'd say he had a death wish.  Driving fast in Jersey is merely a survival tactic known by few. Gosh, I miss that...

I know where Summit is - my Dad used to work there.  I don't think I'll be able to make the trek to the city because then I'll be leaving my family with no car and leaving my husband with all the kids!  While that sounds like heaven to me, he may not think so.  But, you never know....I'll keep my options open.

K- Baltimore is only about 3 hours from Seaside!

Lori (I feel like a travel agent...)
Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

wendysig

  • Hero Member
  • *****
  • Posts: 1937
Re: I have my approach -- just waiting for a date
« Reply #48 on: June 09, 2008, 10:28:51 am »
Hi Lori -
I would have shared my ice cream, but it wouldn't go through when I tried to send it.  I'm not sure where Seasiide Heights is, but I think Seagirt is about 1 1/2  hours away from me.  Not a bad drive.  If Spring Lake is close by, I should be able to make it for at least one day.  I spoke to Dr. Choe today and will need to get the pre-testing done ASAP upon my return from Florida so that, unfurtunately that needs to be done first.  My insurance company is refusing to accept his first choice of neurosurgeon (Dr. Bederson) as he is out of network, so now I have to go see yet another doctor.  I googled the latest choice, Dr. Chun Chen, and he sounded just as qualified and maybe even more so.  I'm seeing him on June 19.  Hopefully things will come together pretty quick after that. 

Jan - I've heard of Summit but don't know exacly where it is - somewhere in northen New Jersey,  I think.  Tell your brother to slow down -- life is already too short!

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!

Debbi

  • Hero Member
  • *****
  • Posts: 1921
  • Originator of the Magic Scarf
    • Debbi's AN Blog
Re: I have my approach -- just waiting for a date
« Reply #49 on: June 09, 2008, 12:29:07 pm »
Eve - Yes, I TOTALLY want to see your Transear!  And, hoping to see a BAHA too (Jan???)

Well, I can meet in Summit if that is easier for everyone?  Sea Girt is really far from where I am in the hinterlands of northwestern NJ, but noting is out of the question...

Wendy, I've heard good things about Dr. Chen - I hope you will find that you connect with him, as I know how important that is.  Keep me posted...
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

wendysig

  • Hero Member
  • *****
  • Posts: 1937
Re: I have my approach -- just waiting for a date
« Reply #50 on: June 09, 2008, 02:11:10 pm »
Hi all-
Sounds like everyone is in, hopefully including me -- I love it when a plan comes together.  Hopefully by the end of next week or the beginning of the following week I'll have  a definite date for surgery.  That will tell me what time I have free to meet up with all of you!  I really hope this works out! 

Debbi - I've never heard of Dr. Chen before but Dr. Choe assures me he is a brilliant surgeon. I googled Dr. Chen and his credentials are very impressive.   He also told me Dr. Bederson will still be participating in my surgery too.  How lucky can a girl get?  It sounds like I'm getting an all-star team at a first class hospital.  I'm sure I couldn't be in better hands.  I never did write to Dr. Bederson, I guess I should go do that now while I'm thinking about it.  Talk later.

Wendy

P.S. Hope you are feeling even better today!
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!

jerseygirl

  • Hero Member
  • *****
  • Posts: 801
Re: I have my approach -- just waiting for a date
« Reply #51 on: June 09, 2008, 04:29:08 pm »
Debbi and Wendy,

I cannot do Summit; it is too far from me unfortunately. I can definitely come to the city, though. I am also dying to show my Transear! Yes, Lori, when it comes to the Transear, I am a showoff! :D
     
              Eve
Right side AN (6x3x3 cm) removed in 1988 by Drs. Benjamin & Cohen at NYU (16 hrs); nerves involved III - XII.
Regrowth at the brainstem 2.5 cm removed by Dr.Shahinian in 4 hrs at SBI (hopefully, this time forever); nerves involved IV - X with VIII missing. No facial or swallowing issues.

Debbi

  • Hero Member
  • *****
  • Posts: 1921
  • Originator of the Magic Scarf
    • Debbi's AN Blog
Re: I have my approach -- just waiting for a date
« Reply #52 on: June 09, 2008, 06:00:53 pm »
I'm in not matter what.  Let's get a date as soon as you have your schedule, Wendy.

So, Willie had a question when I was telling him about our planned get-together - who is doing the seating chart?  We'll need to keep track of who can hear out of what ear!!!   ;D :o  I was laughing so hard when he said that!

I'll scout out some places near Penn Station if that works for everyone? 

Lori, any chance you could take the train up from the Shore?  I can't remember how far south NJ Transit goes, so not sure if that works or not...

Well, gotta go - my lemon IV is calling me...
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

jerseygirl

  • Hero Member
  • *****
  • Posts: 801
Re: I have my approach -- just waiting for a date
« Reply #53 on: June 09, 2008, 06:10:54 pm »
Wondefrul! I can't wait to see all of you! Debbi, maybe you should post about NYC get together in AN Community section so that everybody can see it and hopefully many more people can join us. Just a suggestion...

                     Eve
Right side AN (6x3x3 cm) removed in 1988 by Drs. Benjamin & Cohen at NYU (16 hrs); nerves involved III - XII.
Regrowth at the brainstem 2.5 cm removed by Dr.Shahinian in 4 hrs at SBI (hopefully, this time forever); nerves involved IV - X with VIII missing. No facial or swallowing issues.

lori67

  • Hero Member
  • *****
  • Posts: 3113
Re: I have my approach -- just waiting for a date
« Reply #54 on: June 09, 2008, 07:29:54 pm »
Hey, there's always a chance!  I'll look into that.  If not, I may be driving up to North Jersey one day to visit a friend in Wayne who just had a baby ( I was planning on saving that for a rainy day so I won't miss out on beach time!). 

Yes, a seating chart would be a good idea - or we can all bring megaphones so we can make sure we're heard!

Lori
Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

Debbi

  • Hero Member
  • *****
  • Posts: 1921
  • Originator of the Magic Scarf
    • Debbi's AN Blog
Re: I have my approach -- just waiting for a date
« Reply #55 on: June 10, 2008, 07:21:13 am »
Okay, I'm posting something on the Community section, so we can start planning a date/location.  Thanks for that suggestion, Eve!

Get your Transears, BAHAs, crooked smiles, wonky heards, non blinking eyes, etc all warmed up!!

Debbi
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

Kaybo

  • Hero Member
  • *****
  • Posts: 4232
Re: I have my approach -- just waiting for a date
« Reply #56 on: June 10, 2008, 07:41:19 am »
I"M GETTING JEALOUS...............do you see the green coming out of my ears???

K
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

Debbi

  • Hero Member
  • *****
  • Posts: 1921
  • Originator of the Magic Scarf
    • Debbi's AN Blog
Re: I have my approach -- just waiting for a date
« Reply #57 on: June 10, 2008, 08:02:32 am »
If you're going to be in Baltimore - any chance you could take the train up to NYC for the day?  I think it is only about a 3 hour trip, and it leaves you right off at Penn Stn...

Debbi
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

wendysig

  • Hero Member
  • *****
  • Posts: 1937
Re: I have my approach -- just waiting for a date
« Reply #58 on: June 10, 2008, 11:10:30 am »
Hi all -
This plan is sounding better and better.  I am going to be on needles and pins for the next week and a half or so.  I t would be great if K could get a train from Baltimore and join everyone too.  I'm so excited!  It almost feels like a reunion even though we've never met in person!  Now I have to tell you all about something that happended to me this weekend.  I was at our community pool playing catch in the water with my daughters.  A woman I'd never met came over and asked if she and her daughter could join us.  I said sure the more the merrier.  While we were in the pool she was on my right (AN) side  and after saying what and excues me a few times, I just explained that I was hard of hearing in that ear, but not why.  She was very understanding and didn't seem to mind all my whats and excuse mes after t heat.  When we got out of the pool she introduced me to her husband.  He's not an ANer, but has a BAHA.  What are the chances of that happening?  After we talked for a while I decided to tell them about my AN (this was when I found out he had a degenerative bone disease in his ear, not an AN)  He actually knew what I was talking about though.  In a strange way, it was almost fun to exchange stories.  Anyway we really clicked.  Who would ever think having a hearing problem would lead to making new friends besides all of my fellow ANers!  When life hands you lemons make lemonade!

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!

leapyrtwins

  • Hero Member
  • *****
  • Posts: 10826
  • I am a success story!
Re: I have my approach -- just waiting for a date
« Reply #59 on: June 10, 2008, 03:07:22 pm »
Wendy -

the man at the pool with the BAHA is probably a bigger coincidence than you realize.  The number of BAHA users in the US is growing, but from what I understand, we are still a minority among deaf people.

Very "cool" story - and not just because of the pool  ;)

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