Author Topic: Headcount of Forumites attending Cinci Symposium  (Read 50270 times)

ksiwek

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Re: Headcount of Forumites attending Cinci Symposium
« Reply #105 on: June 21, 2011, 09:23:18 pm »
Hi all,

Just wanted to post here to echo the same comments...what a wonderful weekend!  My husband and I are so happy that we decided to attend.  In addition to the vast amount of information and support offered, I truly felt that this weekend helped me with emotional healing as well!  A whole weekend off of not having to explain 'wonky head', fatigue and SSD  ;D  It really was incredible to meet so many caring and supportive patients and healthcare providers!  Congrats to ANA for a well executed program!

Dr Friedman sure is amazing!  I was so excited to see him again a year post op...his big heart never ceases to amaze me.

I wish I was able to meet all of you forumites...but we couldn't make all of the meeting with having a 1 year old  ;D  As for now, we are definitely planning on bringing him to the LA meeting...he can see where he was born!

ANA sure brought together a really great group of folks!

Best to you all!
Kris
Translab 6/4/10 for 4+ cm left AN.  Drs Friedman and Schwartz at HEI saved my life!
BAHA surgery on 10/7/10 with Dr Battista of Chicago Ear Institute (Oticon Ponto Pro)

ppearl214

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Re: Headcount of Forumites attending Cinci Symposium
« Reply #106 on: June 22, 2011, 03:47:06 am »
BTW..... I do have pictures but have been busy the past few days since I've been back.... will attempt upload in next day or so. Will upload to a Photobucket site. If any of you have pics you want to upload, please PM/email me here and I will create an albumn so we can consolidate pics to one location for ease of access for others to see, if you are interested.......

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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Re: Headcount of Forumites attending Cinci Symposium
« Reply #107 on: June 22, 2011, 05:35:44 am »
Was wondering just last night where the pics were... ???

;D
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!

kraynok2

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Re: Headcount of Forumites attending Cinci Symposium
« Reply #108 on: June 22, 2011, 08:38:51 pm »
Hi Everyone!  I'm late in posting after the symposium.  I was really tired Monday and spent the day not doing much but resting.  Then last night, Tuesday, we went to Pittsburgh to see Jimmy Buffett and got home very late as we are around 2-2 and a half hours away.  Sooo, I'm finally catching up here.  I have to echo what everyone else has said.  The symposium was great and full of information.  It was so good to meet Phyl, Cheryl, Tim, Glenn, Kris, Mei Mei, Dave, and so many others.  Phyl, you always do a great job and I enjoyed being there with you.  You did great at our little hospitality room get-together.  Glenn, my husband and I enjoyed talking with you every time we ran into you.  Dave, we also enjoyed visiting with the "Ohio State" fan.  (Remember, Rodriguez and Stewart are looking for jobs!  ;D ) Cheryl, you were the first one I met (after registering and meeting Phyl) and you helped ease us into the symposium.  We had such a good conversation with sharing information.  After her interesting AN story, I looked forward to meeting Kris and enjoyed talking with her.  Thanks Kris for sharing your information about the Ponto.  Mei Mei, we got a charge out of you and the camera.  I'm glad you finally got it charged.  :D  I hope your pictures and video come out.  As I am not very good with names and did not get everyone's names, I am so glad to have met you and so many other really nice people.  I also appreciated the doctors taking time to talk to you when you stopped them to ask a question.  I was having a problem with my scar from the parotid gland tumor and asked a few of the doctors about it.  Even though this was an AN meeting, they all were so kind as to offer their opinion of the problem.  I will be going back to Pittsburgh tomorrow for a check-up and hope to get this scar healing better, as it has been 7 weeks, today.  For me, the AN surgery post experience and healing was a lot easier.  Well, I've rattled on long enough.
Sandy

G_Man

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Re: Headcount of Forumites attending Cinci Symposium
« Reply #109 on: June 22, 2011, 08:58:32 pm »
Hey Phyl how about taking that "?" off my name now, ok"?"
It was great to meet you.
Glen

I'll think about it!  >:D

Phyl ;)
You are such a meanie!   :'(
Diag: 08/11/2009 Left side
AN: 0.6cm.  65% Hearing loss, tinnitus, fullness, minor motion issues.
hearing loss over 25+ years.  MRI in 2000 showed nothing.
Optical Atrophy from infantcy
Watch and Wait.
As of 2017 I am on a 2 year MRI frequency.

Mei Mei

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Re: Headcount of Forumites attending Cinci Symposium
« Reply #110 on: June 23, 2011, 06:45:16 am »
 ;D  She sure is!
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

Cheryl R

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Re: Headcount of Forumites attending Cinci Symposium
« Reply #111 on: June 23, 2011, 07:24:20 am »
Some pics not around yet as I'm not home yet.    Later today as am back in Iowa from the Ohio sightseeing.    A nice vacation!  Going to see my sister and then home.
                                                              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

MGengo

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Re: Headcount of Forumites attending Cinci Symposium
« Reply #112 on: June 23, 2011, 07:52:10 am »
Mei Mei,

So sorry to hear of your experience with your surgeon.  I have to echo Cheri's feelings about the surgeons at HEI.  Dr. Brackmann performed my middle fossa surgery nearly four years ago, and each time I see him, or e-mail him regarding my progress, it's like talking to a dear old friend.  Since I live on the east coast, John's Hopkins was one of the centers I considered.  I'm glad I decided to make the trip to House.

Mary Ann

Mei Mei

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Re: Headcount of Forumites attending Cinci Symposium
« Reply #113 on: June 23, 2011, 01:00:37 pm »
I know this Mary Ann.   I spoke with Dr. Friedman twice and he said if there's anything he can do for me let him know.   He wanted to do Middle Fossa and as you know I had the retrosigmoid.   Even talked to a Willing to talk person near where I live and she encouraged me to go to LA.   Back in 1989 I went out there for another surgery but this is more than 20 years later and my father is living with me.  I was so torn and just bit the bullet and went on to Hopkins.  One of my worst decisions.   Come over and visit some time.  I live near downtown Bethesda.
Hugs,
Mei Mei
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

leapyrtwins

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Re: Headcount of Forumites attending Cinci Symposium
« Reply #114 on: June 23, 2011, 03:49:40 pm »
Okay, so where are all the pictures  ???

I just returned from a short Forum sabbatical, compliments of a huge storm here in Illinois that knocked our power out for a couple of days and I was SO hoping to see some pictures.

Anyone???

And Tim, I'm glad to hear you are renewing your term as a local group leader.  Kudos to you  ;D

Jan (thinking about LA, but definitely not sold on it).  Maybe I'll start my own symposium in Boston in 2012  >:D
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

Mei Mei

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Re: Headcount of Forumites attending Cinci Symposium
« Reply #115 on: June 23, 2011, 04:47:43 pm »
Dear Jan,
I consider myself a computer person and can't figure out this Flip Camera that I won on Friday night.   I will send the pictures from my Panasonic Lumix to this link with in the next few hours.   Glad to hear you are back in business.  Nothing worse than problems with the utilities.  We were without electricity for one week in Jan and two weeks in Sept a few weeks ago. 

I am bringing my Flip back to Boston in two weeks.

Hugs,
Mei Mei
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

CHD63

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Re: Headcount of Forumites attending Cinci Symposium
« Reply #116 on: June 24, 2011, 05:27:48 am »
OK, here goes a try at the only picture my husband took at the symposium.  It was taken after the closing Brunch.  Several Forum attendees had already scurried off to check out from the hotel.  Many more of us were there.  I know Phyllis was busy taking pictures, as well as others.  Hopefully more will show up soon.



David, Barb, Cheryl, Sandy, and me

Clarice


Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

ombrerose4

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Re: Headcount of Forumites attending Cinci Symposium
« Reply #117 on: June 24, 2011, 08:36:28 am »
GREAT picture Clarice! I know that Jeff took many pictures but I'm not sure where he is posting them and when. Can't wait to see more:)
Retrosigmoid 9/24/09
AN 2.4+ cm left side
Mount Sinai Hospital, NYC (Dr. Bederson and Dr. Choe)
BAHA surgery 1/4/2010

ppearl214

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Re: Headcount of Forumites attending Cinci Symposium
« Reply #118 on: June 24, 2011, 10:06:03 am »
I know those faces Clarice! thanks for sharing! :)

Yes, hopefully, I'll be posting some this weekend. Been hectic week for me since I returned and should have time this weekend to post some.... so..... forthcoming! :)

Phyl
"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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Re: Headcount of Forumites attending Cinci Symposium
« Reply #119 on: June 24, 2011, 04:55:01 pm »
Thanks for the picture, Clarice.

I also got some via email today from Cheryl R. 

You guys are looking good  ;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