Author Topic: Those attending July's Symposium  (Read 25418 times)

Omaschwannoma

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Re: Those attending July's Symposium
« Reply #15 on: April 12, 2007, 09:14:43 am »
Hi Everyone,

Well I have made reservations and my husband, Gary, will be with me too.  He's easy to spot in a crowd as he sports a bald head and grey beard growing past his chest!  I look forward to meeting all of you!
1/05 Retrosigmoid 1.5cm AN left ear, SSD
2/08 Labyrinthectomy left ear 
Dr. Patrick Antonelli Shands at University of Florida, Gainesville, FL
12/09 diagnosis of semicircular canal dehiscence right ear

ppearl214

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Re: Those attending July's Symposium
« Reply #16 on: April 23, 2007, 10:33:04 pm »
Looks like I am going... no word if Iain/Cheeky Bloke will make it as that is all based on US Immigration letting him into the States and when.  Will advise further updates on my attendance but as of now, looks like I will be there! 

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

EileenK

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Re: Those attending July's Symposium
« Reply #17 on: April 23, 2007, 11:16:42 pm »
Newest Newbie writing here...I plan to attend the Symposium in July, for whatever it is worth to anyone else since I don't know anyone here and am showing my baby-boomer age by being quite overwhelmed by this Forum Board!  I am wondering if I will ever find my way back in here again!!

I have attended one previous Symposium in 1999, held in Milwaukee.  I decided last week to see if I could find this website again because I would like to find inspiration in some kindred spirits and also to learn what the latest developments are for restoration or partial restoration of hearing capabilities.  Plus, I've never been to Philadelphia.  But I must wonder if my scarred head is betraying me for thinking I could survive in the heat and humidity of a steamy Philadelphia in July!!
Right-sided 4 mm AN removed 07/01/1997
Swedish Hospital, Seattle WA
Charles Mangham, MD, Neuro-Otologist/James Raisis, MD, Neurosurgeon.
I say affected ear is like a Hood Ornament--Decorative, but not functional!

palms0@hotmail.com

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Re: Those attending July's Symposium
« Reply #18 on: April 24, 2007, 11:22:06 am »
Hi Take it from a life long Philly resident July is HOT & HUMID so pack accordingly. Just thought I'd pass on an experience we had at the Jefferson Headache center this past Friday. My husband who is 9 mos post surgery has been going there since 10/06 for some relief from his daily post-craniotomy headaches. He has been on many differnt meds but really no improvement. The Botox injections seems to help the most. But we keep hoping that he'll find the right med to give him some relief. Back to our experience we see the Fellow there he is very caring and sympathetic, but since he is a Fellow all patients must be either seen or discussed with one of the attending dr's which is fine. Well the director of the clinic comes in and the first thing he says to my husband is has the Cymbalta caused any erectile disfunction? Granted this can be a side effect so my husband says no. End of story right??? No this dr proceeds to ask the MOST INAPPROPRIATE line of questions which has nothing to do with the care of his headaches. Such as how often do you have sex, my husband does not answer, and he keeps pushing and pushing so finally I say it's none of your business it has nothing to do with his headaches. And then he proceeds to say I won't treat you anymore if you don't go to couples counciling!  I then stated again this has nothing to do with your treatment, you met us 2 minutes ago . But this guy was so rude and pompus, I said is there a right answer to your question? who are you to deterime what is normal for couples?, but he was just not happy he could not get an answer! The tactful question would have been is there any change in that area of your life, but tact must have been a class he did not take in medical school. Just wanted the AN family to know, because this dr is one of the symposiums presenters!!! :-\  I work for an ophthalmology group and discussed it with our dr's if his line of questions had any medical warrant for asking and the dr's stated a strong NO!
I have worked in the medical field for over 25 years and never have I felt as uncomfortable as I did in that situation.My husband was and still is upset for the way he spoke to us, and left there with a worse headache then when he came in.
We will march on looking for the "cure" for these headaches, just don't want others to be looking for the answer to the headache questions at the symposium.
9mm retro sigmoid drs. evans and willcox jefferson hosp phila
facial palsy, external eye weight, headaches 24-7, incisional pain 24-7, balance issues
i was a 46 yo happy active man, now this surgery has ruined my life
I WANT MY LIFE BACK!
ps still have 4mm enhancing area :(

johnsli

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Re: Those attending July's Symposium
« Reply #19 on: April 24, 2007, 12:54:08 pm »
I wish I could go to the symposium, but, I think that is the same time that my daughter has a baton competition. 
That being said.  I am really getting worried.  I go to see Dr Wilcox on 5/15.  Then I go back to see Dr Evans after that
Haven't scheduled surgery yet.  I am really haven't second thoughts after reading these posts.  I felt very comfortable with Dr Evans when talking to him, but, after reading horror stories, I don't know what to do.  I have been told by Stevey about Dr. Judy and Dr. Bigelow at University of Penn.  I just don't know what to do.  I was never given the wait and watch.  Only choices were surgery or Gamma KNife.  I just want the darn thing gone.  Please help.

ppearl214

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Re: Those attending July's Symposium
« Reply #20 on: April 24, 2007, 01:15:38 pm »
John,

IMO, life is filled with risks. I know so many here locally to Boston that had surgery and have fantastic outcomes... even Crazykat/Paul, who's AN was the size of a softball (trust me, I've seen his MRI films up close and personal) and he's doing fabulous... as are so many others. Remember, this is a limited number of folks that log onto this website as there is still an array of AN'ers out there that do not log on, so they have stories... some good and some not so good....

You do what you feel is best for you. There are other radiosurgery options (besides GK but GK is still an extremely viable AN treatment option) as well (FSR, Cyberknife and Proton) if you do decide to stick to the radiosurgery route (lots of info in the "Archives" forum, as well as the "radiosurgery" forum.  I have faith in you to do what is best for you... and remember to be at peace with what you choose.  Never 2nd guess your decision as you are doing what is best for you at the time of making your decision. 

Hang in there John. Research, research and you are doing great by reaching out to those of us here.  There's many of us with great outcomes, good outcomes and not-so-good outcomes. Just remember one thing.... "individual results may vary"... just keep that in mind.

Phyl

I wish I could go to the symposium, but, I think that is the same time that my daughter has a baton competition. 
That being said.  I am really getting worried.  I go to see Dr Wilcox on 5/15.  Then I go back to see Dr Evans after that
Haven't scheduled surgery yet.  I am really haven't second thoughts after reading these posts.  I felt very comfortable with Dr Evans when talking to him, but, after reading horror stories, I don't know what to do.  I have been told by Stevey about Dr. Judy and Dr. Bigelow at University of Penn.  I just don't know what to do.  I was never given the wait and watch.  Only choices were surgery or Gamma KNife.  I just want the darn thing gone.  Please help.
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

johnsli

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Re: Those attending July's Symposium
« Reply #21 on: April 24, 2007, 01:23:19 pm »
Thank you so much.  I have tried to leave it in God's hands.  I guess I got a little panicky.  I guess that is normal.  I feel better now.
You guys are the best.  Dr Evans said not to wait to much longer, because of my balance issues and my headaches.  No longer than about two months.  The office has called a couple of times to check on me, so that is good.  I would love to meet you guys and maybe I still can. 

LOL
XOXOX
Laura

ppearl214

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Re: Those attending July's Symposium
« Reply #22 on: April 24, 2007, 01:45:31 pm »
Laura

me bad!  :o  You are not John!  :o  sorry bout that!

If you can research local ANA support groups, IMO, that would be a terrific opportunity to meet face to face with others who have been the route.. as well as others in watch/wait mode. It truly does make a huge difference when you meet folks in person. 

I know you are going to be fine.... and all of our shoulders.. .and good ears are here for you. Take advantage of it..... that's why we're here.

Hang in there... Laura! :)

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

krbonner

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Re: Those attending July's Symposium
« Reply #23 on: April 30, 2007, 09:16:37 am »
I've registered and got the hotel reservations for the Symposium.  Now I just have to figure out how to get there!   ;D

Phyl - let's get in touch after I get back from AZ next week and we'll coordinate.

Katie
diagnosed June 2005
2.3cmx1.6cmx1.4cm left AN
translab Sept 13, 2006; Drs. McKenna and Barker in MA (MEEI/MGH)

ppearl214

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Re: Those attending July's Symposium
« Reply #24 on: May 01, 2007, 06:26:48 am »
I've registered and got the hotel reservations for the Symposium.  Now I just have to figure out how to get there!   ;D

Phyl - let's get in touch after I get back from AZ next week and we'll coordinate.

Katie

You got it Katie... will do my hotel reservation this week and have a fab trip to AZ! :)

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

Battyp

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Re: Those attending July's Symposium
« Reply #25 on: May 02, 2007, 06:33:08 pm »
I'm going....hold the plane please!  :-*

ppearl214

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Re: Those attending July's Symposium
« Reply #26 on: May 03, 2007, 09:58:11 am »
Oh, Philly is in deep doo-doo!!!!!!!! ;)

YAY Batty!!!!!!!!! Can't wait to FINALLY meet you!!!!!!!!!!!   :-*

Phyl

I'm going....hold the plane please!  :-*
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Captain Deb

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Re: Those attending July's Symposium
« Reply #27 on: May 04, 2007, 10:56:12 am »
OK all you scurvy scoundrels and wicked wenches!

Capt Deb has her rezzies at the Hotel Double-bubble-toil-and-troubletree and will not have to sleep in her hammock unless her room fills up wiv homeless ANers who shows up unannounced!

Capt Deb 8)
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
Captain & Designated Driver of the PBW

Omaschwannoma

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Re: Those attending July's Symposium
« Reply #28 on: May 07, 2007, 08:18:24 am »
Cap'n Deb going--yeah!  Here's trouble.  Look forward to meeting everyone.
1/05 Retrosigmoid 1.5cm AN left ear, SSD
2/08 Labyrinthectomy left ear 
Dr. Patrick Antonelli Shands at University of Florida, Gainesville, FL
12/09 diagnosis of semicircular canal dehiscence right ear

ppearl214

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Re: Those attending July's Symposium
« Reply #29 on: May 08, 2007, 09:05:39 am »
I've begun to take donations for bail money..... :D
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"