Author Topic: Symposium 2009 Pictures  (Read 80775 times)

sgerrard

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Re: Symposium 2009 Pictures
« Reply #210 on: August 24, 2009, 09:41:51 pm »
(And is there a way to edit once you've posted?  I'm obviously new at this.)

Denise,

You can always edit your own posts. That is what the Modify button is for, and also the little pencil and paper icon in the lower right corner of your post. You can also delete them.

I think people will know what you meant, though, so I'm not sure you need to edit. Even facial nerve issues can't hide a real smile.  :)

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

saralynn143

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Re: Symposium 2009 Pictures
« Reply #211 on: August 25, 2009, 05:39:24 am »
Denise, I am one of the crooked smilers, and your post did not offend me. I'm glad that meeting those of us with facial paralysis eased your fears. I think for many people the opposite might be true.

Please don't give your post another thought.

Sara
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

tenai98

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Re: Symposium 2009 Pictures
« Reply #212 on: August 25, 2009, 06:03:57 am »
Hi Denise
I had microsurgery almost 5 months ago and did not ended up iwht facail paralysis....I went in with Grade 1 and came out with Grade 1 on the scale...And as stated, we know what you mean by 'so what'....I say if a person doesnt like you for who u are inside then who needs them around....
JO
14mmX11mmX11mm left ear
TRANSLAB 04/07/09 2cms at time of surgery
Dr. Benoit and Schramm, Ottawa Civic Campus
SSD ,some facial numbness
Baha surgery sept 22/09
residual tumor 13mmX7mmX8mm
2016 new growth.  25mmX21mmX22mm
cyberknife on June 7

Debbi

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Re: Symposium 2009 Pictures
« Reply #213 on: August 25, 2009, 06:57:46 am »
Hi Denise-  I thought your post was very complimentary and not at all offensive to those of us with crooked smiles.  I came away from the conference realizing that those little bits of asymmetry, the dimpled chins and those slightly lopsided smiles  ;) are part of what makes us who we are today.  Would I have preferred to skip the facial paralysis part of this - you bet!  But, I also know that it has been a learning and growing experience for me.  And, people don't react any less favorably to my "new" smile than they did to my "old" one!  Go figure!

I don't envy you the prospect of facing a second treatment, but you sound like you have a good attitude.   I'll keep my fingers crossed that you can avoid surgery!

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

Pooter

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Re: Symposium 2009 Pictures
« Reply #214 on: August 25, 2009, 10:32:40 am »
Lilan and Jan.


Okay, perhaps someone mentioned the obvious, but I didn't see it..  Is that your tattoo on your arm that we can partially see in this pic, Jan?

Btw, LOVED all of the photos (even the Photobucket slide show, Phyl).  I'm already packing my bags to I make sure I don't miss the next one.

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

Kaybo

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Re: Symposium 2009 Pictures
« Reply #215 on: August 25, 2009, 10:34:45 am »
Yes, Brian - that is her tattoo!!  ;D

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!

ppearl214

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Re: Symposium 2009 Pictures
« Reply #216 on: August 25, 2009, 11:51:31 am »
Yes, Brian - that is her tattoo!!  ;D

K

If my old age memory serves me well, her tat is the date of her AN treatment... and looks great on her!

Glad you enjoyed the Photobucket, as well, my dear Pooter! :) that's why its there!

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: Symposium 2009 Pictures
« Reply #217 on: August 25, 2009, 10:07:06 pm »
Yes, the tattoo is my surgery date 5-31-07.

I'm contemplating adding the date of my BAHA surgery to it, but I'm not sure about that just yet.

Missed you in Chicago, Pooter - hope to see you in Cincinnati  ;D  Bring your better half - we'd love to meet you both!

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

Pooter

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Re: Symposium 2009 Pictures
« Reply #218 on: August 26, 2009, 04:42:36 pm »
Who says she's my "better half" ?  Wait, who am I kidding...  :)  I hope to be there in Cincy also. 

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

alicia

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Re: Symposium 2009 Pictures
« Reply #219 on: August 26, 2009, 06:53:04 pm »
I am obviously very slow jumping in, but I just found this thread!  I love all these photos...you all look great!  Wish I could have made it, but now I feel like I was there  ;D 

Thanks everybody for all those smiles!
02/16/18 III to IV post GK Facial Paralysis
12/13/17 Gamma Knife
05/19/09 Translab Larger than expected - Drs used the word "tangerine"   House - Friedman and Schwartz
04/02/09 Diagnosed Left AN 3.2cm x 2.6cm x 2.7cm

sharonov

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Re: Symposium 2009 Pictures
« Reply #220 on: August 27, 2009, 06:59:04 am »
I know I'm not alone in this, but I didn't like the speaker.  I was so offended by how he "lost" his family (he should have been a politician and then his poor wife would have to have been a doormat and kept him around.)  I wish he was still cleaning toilets.  I would never, ever buy his book or pay to see his movie, but does anyone know what happened to the girlfriend and her baby?  Does he ever express sincere regret for what he did?  Also, someone said that in his book he calls his AN a "brain tumor"--which it technically is, but I always feel that calling it only that is mostly a plea for attention.

And no, my husband is a sweetie, but I've had countless friends & several relatives whose husbands acted like this jerk and their selfishness absolutely devastated their families' lives.   I wish them only evil. 
Sharonov

4cm in Pacific Northwest

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Re: Symposium 2009 Pictures
« Reply #221 on: August 27, 2009, 02:03:54 pm »
I know I'm not alone in this, but I didn't like the speaker.  I was so offended by how he "lost" his family (he should have been a politician and then his poor wife would have to have been a doormat and kept him around.)  I wish he was still cleaning toilets.  I would never, ever buy his book or pay to see his movie, but does anyone know what happened to the girlfriend and her baby?  Does he ever express sincere regret for what he did?  Also, someone said that in his book he calls his AN a "brain tumor"--which it technically is, but I always feel that calling it only that is mostly a plea for attention.

And no, my husband is a sweetie, but I've had countless friends & several relatives whose husbands acted like this jerk and their selfishness absolutely devastated their families' lives.   I wish them only evil. 
Sharonov




Sharonov,

Please know that I have known both men and women who have treated their family deplorably. And yes some have gone on to remain self-righteous and egocentric causing terrible emotional harm not just to their spouse but also harm to their children on a longer term physiological basis. These perpetrators are unable to realize how selfish and inappropriate their narcissistic behavior affects others. This is often true if an adult who was raised as a spoiled child to which everything was provided and they never experienced adversity. Sadly I have experienced one too many people of this sort, on more than one occasion, in my life.

However I must tell you that one person, close to me, who followed that negative tract I have described above – changed. Not until after experiencing bankruptcy and the long and drawn out death of the second spouse who died of cancer.  That person went from wealth affluence, prestige (that came with the family inheritance), and professional recognition... to being bankrupt and alone. That person went from being always served to one who was later serving (by choice). That person transformed from a negligent and absentee parent to one who was found cuddling grandchildren, changing their diapers and folding the laundry for the adult child’s family (whom they once so neglected when that adult child was little). The person changed. They changed because they were willing to accept responsibility for their actions and stop blaming others. From there -peace and forgiveness could be established with their adult child. The constant self-edification and blaming of others, for various mishaps, finally came to an end. From there- more positive relationships established with more depth and less superficiality.

What the guest speaker wrote and spoke about was that it took loosing all material wealth and status, respect from family iced on top with the diagnoses of a brain tumor that forced him to stop in his path of destructive behavior. By being more accepting (taking on the job of being a barista at Starbucks being the first step- even if it came by circumstance) this speaker/author was able to cross over the line and walk a mile in the shoes of another person who was NOT always served (or doted on by others) but actually served others.  He was also able to break through his prejudice of women’s capabilities and accept people of a color or culture- different than his own. (I think Crystal & Chester, mentioned in his book, were “called” to be his patient teachers)

This is often why in the USA “community service” is encouraged. Community service is not as a punishment (as in other countries I have experienced) but an “educational opportunity” for youth to grow – as part of their school education. The opportunity for my own children to serve meals to homeless at a shelter, as a part of their education, is something I was personally deprived of. Myself and other parents who encourage the community service component of education want to raise children who have understanding and compassion for others.  Also for  our children to know when they are “called” to serve and when it is time to exhibit selfless behavior and step-up-to-the-plate when asked to do so- and not begrudgingly but willingly. I am pleased to see more and more corporations now actually encourage community employee volunteer hours to which each hour their employee volunteers, at a non-profit, they will also send $10 hour to that non-profit organization.

We recently had a community in Oregon devastated by flooding- not even the high school could be used for shelter, as it too was flooded- as was their local food bank. It spoke volumes to those children when many corporate men and women took the day off of work, drove to a community that was not their own, and helped families not just replace floors in houses but used their professional expertise to help those families, who are less educated, to sit down with them and help them fill out FEMA forms ( work by the reims). That not just spoke volumes to the families of that town but to corporate employee volunteer’s own children- as their parent took time off to model community service.

Here are a couple of random articles to share

http://www.vernoniacares.org/news/vernonia_voice_2_2009.html

http://oregoncanineuniversity.org/?p=459



I must admit when I read the 1st few chapters of this book I wanted to scream and put it down.  ;D Nevertheless because of the reviews I was aware that I needed to “keep reading” to understand it more.  This is a man, unlike so many others  (men or women) who acted inappropriately, who is actually willing to admit that. He is regretful that he has hurt others and wants to change. He wants to serve others, willingly, and be a better person so he can be there for not only his now adult children but also his youngest child. What I have no doubt about with this author, (who is too -similar to the person I mentioned above who also lost it all in divorce, bankruptcy, death of 2nd spouse) -he will be a very supportive and involved grandfather. He may also have broken a family pattern here where the affluent snub the underprivileged- and may now provide a better role model for parental involvement- now that, post middle aged mid life crises  ;) , he chose to grow up.

In the corporate world I witness one too many parents who are much more interested in climbing the corporate ladder -than spending QUALITY time with their own children.  I also witnessed this in my former years as a classroom teacher. When summer opportunities arise - they’d rather chose to send their kids off to expensive summer residential camps than spend the quality time with their kids. I see these kids with: all the latest and greatest labeled clothing, a myriad of electronic toys... but what they are truly starving for is parental attention. Know this is not just a problem with corporate fathers – but more so now with the corporate and/or executive mothers also.

I personally like that he explains a corporate model, discussing “egalitarianism” (although that word is not used specifically in the book) - as this author IS going to reach the corporate/ executive positioned readers- the ones who I feel that need to read this book the most. More specifically those who snub those who they feel are beneath them.

Please see this New York Times article and view the video
http://www.nytimes.com/2007/09/13/garden/13gill.html?_r=1


Yes no doubt there is going to be royalties that come in from: his book, his public speaking venues and yes  :-\ probably even the movie too. But I am confident that his money will no longer be spent on buying exorbitantly priced bottles of Champaign to impress his superficial friends (or even sincere friends) but will most likely be used to help non-profit societies that are interested in helping people who need resources. He has moved away from buying “stuff” as he now knows, from personal experience, that materialism does not buy happiness.

There were many professionals in the audience listening to Michael- both patients and medical practioners. As I think of the many that possibly are spending too much time on their careers and jobs that pay for their materialistic possessions – it is my hope that Michael’s talk may have encouraged them to think less about their “stuff”  (and prestige) and more about community service and spending time with their own families and friends.

Oregon State, where I currently reside has now the highest number of homeless families in the nation. We did a family tent camping trip to some beurtulful State Parks, this summer, however the experience turned out different than I planned (or from previous years). We witnessed one too many homeless families going campground to campground to get them through the summer. Domestic issues were heard through the tent wall that you would not hope for on a family vacation. At first I wanted to shelter my kids from this but they did come home very appreciate of what they do have.

Here is an article on this homeless issue- here in the Silicon Forest (which was once a booming economy)
http://www.ktvz.com/global/story.asp?S=10720375
As I walked the Magnificent Mile outside the Drake Hotel I notice "help wanted" signs. You are just not seeing those near our Sax Fifth Avenue in Portland- as I once did during the economic boom times.

I know one too many families that have purchased way too much stuff on credit. I have actually watched families, who are high tech industry corporate employees (yes even some from Nike so not all high tech), lose their homes. ... And pull their children out of private school mid-year. It is devastating for the kids. One too many people are only one paycheck away to homelessness if they are laid off –and their company does not offer a severance package. Fellow parents I knew who were into the “I owe I owe- it is off to work I go” mode as they were trying to pay off the “stuff” they bought for their kids.  Yet really what the kids wanted was their attention. Often the stuff is bought out of guilt of not being able to spend time with the kids. The cycle can be a downward spiral...

These issues I mentioned are heavy weighty issues.  :( What I like about Michaels’ book is he has a witty  :D writing style that makes this book a good easy read on a weekend.  He knows how to speak the language of the affluent and it is my hope that he will reach that audience- specifically. The ones who need to cross the bar and have more empathy and understanding for those who are socio-economically different than themselves. His book makes people reflect. 

This author has spoken to corporate audiences and others.

Here is a sample of his talk to Google (he is more relaxed here- no neck tie!)
http://www.youtube.com/watch?v=E6bhkNJOsrs

His honesty and sincerity in the above video is compelling. You will note that when he is out west, not wearing his tie and jacket, he is much more relaxed. His talk for us at the symposium was shortened, as we had to stay “on time”. People had to check out of the Drake and catch rides to the airport (with a storm looming). Google was a smaller more intimate audience- ours was  huge in a decadent hotel (probably bring back many memories of his corporate advertising days alongside the stangling tie and suit jacket her wore...  ;) )


I think that for Michael to speak with us who have been treated, specifically, and to witness facial palsy & synkenisis, people with walkers and canes probably shook him a little and it may have been frightening for him.

We were a tough audience to face- specifically for a “wait and watcher”.  I think that for any wait and watcher it would be difficult to speak- specifically with us who have post op complications.  The symposium experience was probably informative to them but also at the same time terrifying. I witnessed Mike take the time to speak with our youngest AN patient, at the symposium, and encourage her to write her thoughts down and to keep moving forward. Different than other celebrities I have seen, who just ACT and say the right thing, - Michael was truly being sincere to her.

I think it took a lot of courage for this author to speak to us. He did this against the advise of his publisher. He wanted to be there for us.

He once pre-judged people BEFORE he crossed the barista bar. Please do not prejudge him and his character. I believe he is a changed man who is willing to publicly admit his mistakes. I ask you too to cross the barista bar and just read his book. (My library had many copies but there was a hold wait list.) It has much more depth and meaning to it -than you actually might think.

He may not have been the model father (and certainly not husband) but I think given a second chance he is going to make an awesome grandfather (and Dad to his very young son- who he had later in life.)

Please do not judge him in haste- give him a second chance.

 I am not here to judge fellow AN patients but to try to walk a mile in their shoes and be here to support them.  Personally I think Mike would be an awesome person to have in a support group because of his life experience, and yes even the negative ones, having given him tremendous empathy and understanding for others. I would also let him know it is OK not to wear a tie. Our support group has people from all walks of life: some related to doctors and some who had to jump the Medicare hoops to get assistance and have no supportive family close. One even had to move in with an aging parent as the house had to be sold to cover the medical expenses.  And one special member knits hats for others and adamantly refuses to wear a tie- even in the ballroom at the Drake::) ;) :-*  I know our own group would welcome this speaker (a fellow AN patient) in- with open arms. That is what we are here to do- offer support and not judge past lives but to assist fellow patients to move forward in their Acoustic Neuroma Journey. If you scroll down on the ANA home page understand that we are found under the “support group” section.


The guest speaker is not “one of them”- he is “one of us”-  our wonderful diverse and accepting support group of acoustic neuroma patients. I will not pre-judge him. I am going to offer him huggles (I learned this skill from Pearly Whites  ;D ) and encourage him to “keep moving forward”. I hope you can be encouraging too.

Peace, forgiveness... and ONLY goodness (I wish NO evil!)

Daisy Head Mazy :)


                           


4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!

CHD63

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Re: Symposium 2009 Pictures
« Reply #222 on: August 27, 2009, 02:36:45 pm »
DHM .....

I read Sharonov's post earlier and was so upset I could not formulate a kind answer ...... you did it beautifully!  I can only add that I think Michael Gates had a life-changing experience when he "lost it all" and is truly a repentant man.  He has made (is making) his amends and as human beings we all deserve that right of forgiveness and making amends.

Thanks for understanding the value of all human life!

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

mimoore

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Re: Symposium 2009 Pictures
« Reply #223 on: August 27, 2009, 02:55:03 pm »
Very, very, very well said DHM! You have truly put a lot of thought into your response and quite frankly I was very encouraged for man/woman kind after reading your post. Life is so much more than material things, and no I haven't read Michael's book yet.
Michelle  ;D
Retrosigmond surgery on June 4th, 2008 for an AN. 100% hearing loss and facial paralysis (was not prepared for facial paralysis). Size: 2.3 cm, 2.1 cm, 1.8 cm. some tumour remains along facial nerve. Pray for no regrowth. Misdiagnosed for 10 yrs.

Kaybo

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Re: Symposium 2009 Pictures
« Reply #224 on: August 27, 2009, 03:43:00 pm »
I, like Clarice, did really not know how to respond to Sharon's post...as always, I can see BOTH sides.  There were some questions that I would have liked to address (the baby and mother, did he compensate Crystal after he obviously got back on the big track with his book/movie) and so I am choosing to read the book in hopes that some of my questions are addressed/answered.  I think that it is OK to doubt a bit when someone makes such a big "turn around" change and is so public about it...BUT, as with anything else, it is not MY place to judge that person.  I can CHOOSE to be happy for him that he has changed & is a better person (EX: better father/grandfather) as DHM pointed out so well...let's hope that that is the case.  I know that if I had gone thru something like that, I would hope that my friends, acquaintances and the people I share my story with take my message the way I am trying to present it.  I don't know if all that makes sense....one thing that I hadn't thought about that I think was a VERY good point that DHM brought up was how this was probably a VERY hard thing for him to do.  Being in W&W and living your life like nothing is really wrong is one thing, but being in a roomful of people that have NOTICEABLE side effects from the treatment of this tumor are TWO very different things.  Heck, it was different for me and I would say that I am VERY WELL ADJUSTED to all my stuff, but to think, "WOW! I could be left like this?" - he did a very commendable job!
Sharon~This in no way is any kind of rebuttal to you - everyone is entitled to their own opinion, but just another side and some stuff to think about...

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!