Author Topic: Have you met Forum AN'ers in ways other than the Forums/Support Groups?  (Read 26460 times)

Kaybo

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Thank you Sara!!
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!

saralynn143

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Kay, where did your picture go?
MVD for hemifacial spasm 6/2/08
left side facial paresis
 12/100 facial function - 7/29/08
 46 - 11/25/08
 53 - 05/12/09
left side SSD approx. 4 weeks
 low-frequency hearing loss; 85% speech recognition 7/28/08
1.8 gram thin profile platinum eyelid weight 8/12/08
Fitted for scleral lens 5/9/13

Kaybo

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I DON'T KNOW!! I have tried & tried to get it to work...so sad...I'm faceless!! :-[ 
also, all of the sudden, I don't get email notifications for PM's either!!

:-[
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!

Kathy M

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Hi guys! I have not personally met any of you but I feel like I have known so many of you for years and years. I will get to meet some at the symposium and I am so excited about that! None of my family can come (I am hoping one of them can drive over for dinner one night) so I will be solo but that is fine.

Hugs to all of you.....and I miss your face kaybo!

Kathy
AN diagnosed 11/14/08, 3+cm, Retrosigmoid 1/13/09, Univ. Hosp., Cincinnati, Drs. Tew and Pensak
no facial nerve or eye issues!
3 more surgeries related to staph infections & osteomylitis over next 13 months.  New diagnosis of breast cancer.  Treatment completed 08/27/10.  Moving on!!!

ppearl214

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I will get to meet some at the symposium and I am so excited about that!......

Kathy, absolutely cannot wait to meet you in Cinci!!!!!! :) :)

K, pls make sure your picture is uploaded to a 3rd-party site like Photobucket, Kodak Gallery, etc... then capture the location's URL (copy/paste) and note in your Profile settings.  Also double check your Profile setting for email notifications. If this continues, please let us know......  :-*

Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Kaybo

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Kathy-

I thought about coming to the Symposium - just to meet YOU!!  ::)

Phyl-
Have done all that...repeatedly...I have even gone back on different days... ???

:)
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!

ppearl214

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Phyl-
Have done all that...repeatedly...I have even gone back on different days... ???

K, you have PM.
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

leapyrtwins

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Kay, since Jan doesn't seem to be chiming in just yet (must be actually working or something crazy!), lets throw her under the bus.  It's ALL her fault.   :P

I've been lurking; just haven't had time to post.  In the past 3 days I've been helping children write papers for school until the wee hours of the morning - and I helped one of them make 30 cookies that looked like frogs for a school project.  Ah, the joys of motherhood  ;D  And to think that I originally hoped for triplets  ::)

I was going to post last night, but was waiting to see if the world was going to end today.  As far as I can tell it didn't, so here I am

I am extremely disappointed that I am not going to the syposium this year - first and foremost because I was anxious to meet Kathy M; I was also looking forward to seeing "old faces" (no insult intended) from the last symposium and hoping to meet a few new ones.  Unfortunately it's just not something I can swing this year.

But there's always 2013 right?  In Boston, right??  (Work on that one, Phyl)

And in 2013, we're going to rally all the oldies - like Pooter (BTW, where is Pooter???).

Jan  >:D

PS - Virginia Beach sounds lovely; so does Texas.  The trio will get together one of these days before the world ends!

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

Keeping Up

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I have met Calimama right after I was first diagnosed - we lived but a few blocks from each other when I was still in Toronto.  I stopped in a few times after her twins were born (her house was very close to the community pool!).  It was great to meet someone who had walked (a very tough) path before me.  I also had a chance to meet MK a few years ago when she passed through Toronto - again, great to meet people who have already made all the decisions.  Gave me great peace for my own adventure of W&W.

Jan - I coach a triplet on a soccer team this season - this family has a 9 year old, 3 7 year olds and 1 5 year old ... I am a mom of four and I am in awe of parents of triplets (and FIVE kids!) 
dx Dec/08 - 5mm x 8mm AN
'watch and wait'

Denise S

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KAY...you have a pic now :-)  Good job!

KATHY...I have to say that if I were in your shoes and going to the symposium alone, I would feel totally comfortable about it THANKS to THIS FORUM!!!  It is like you already know many and you can just be 'meeting up with friends' ;D   Hopefully you have a great time!

Denise (MI)
W&W 2 yrs. (due to watching other brain tumor: it's stable)
Left AN:  1.2 cm (kept growing during 2 yr.)MIDDLE FOSSA  11/9/09;  Michigan Ear Institute Dr. Zappia & Pieper
SSD, mild tinnitus, delayed onset of facial paralysis lasting 3-4 weeks, no tears AN side
BAHA surgery 10/2/12 Dr Daniels G.R.,MI

Kaybo

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Phyl fixed it for me but not home & able to change my saying!  Thanks Phyl!!
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!

saralynn143

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I would love to meet everyone who is able to go to Cincinnati, and could do so if it were in August like last time. June is just not doable with all of our summer activities.
MVD for hemifacial spasm 6/2/08
left side facial paresis
 12/100 facial function - 7/29/08
 46 - 11/25/08
 53 - 05/12/09
left side SSD approx. 4 weeks
 low-frequency hearing loss; 85% speech recognition 7/28/08
1.8 gram thin profile platinum eyelid weight 8/12/08
Fitted for scleral lens 5/9/13

para1

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Anybody from NJ out there?

Cheryl R

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Jan. Pooter is ouit camping and cooking on the camping trips.    Join us on facebook and you'll see!             
    Our end of the world wasn't till 6 pm.       Our grandkids are here so have to protect them !      Mom and Dad are out for a day by themselves.               We took the kids on a very long walk on a new trail that goes onto a bridge over a river that is a bike trail and walking path now.     Grandma here never made it over the whole bridge as had to walk quite a ways to the bridge.   The youngest is now napping and I had a rest too when we got back.
                                     Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

Cheryl R

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I looked it up and the bridge is 1/2 mile long and 13 stories high over the Des Moines river.      It was a half mile from where we parked to the bridge.     Part of a 25 mi biking trail.     Anyone who comes to central Iowa would enjoy it.     Keri would love it but not open when she was to Omaha.      www.hightrestletrail.info           They show the sculpture pieces over the bridge to commenrtate the mining area it was a very long time ago.                Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care