Author Topic: SML (Scarlett's) updates  (Read 50567 times)

NancyMc

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Re: SML (Scarlett's) updates
« Reply #15 on: March 17, 2009, 01:16:30 pm »
Hi, Scarlett.

Steve gave me the instructions below to follow.  See if it works for you.  It's nice to have a face to go with the name.
Also, I just called Millie for the third time today and finally got her after waiting for hours for her to call me.  She said, "You're surgery's on the 8th."  I said, "Yay!"  She's faxing me the who, what, where, and when (not the why) for my pre-op on the 2nd, so here I go!
Think positive thoughts!  When I was in third grade, I played Michael in Peter Pan (the smallest child - I was always the shortest in my class.), and he thought, "Candy, candy, candy" so he could fly.  Maybe you have a word that will help you fly through your procedure and recovery and out the other side to NeverEverAgainLand!
Best of luck to you,
Nancy

If you mean what we call the profile picture, which shows up by your name in every post, these are instructions I posted for Cheza earlier this week: http://anausa.org/forum/index.php?topic=8687.msg94982#msg94982

You do need some sort of account at a publicly accessible web site that can store the picture; they are not stored on the ANA server. Using photobucket is very easy.

Go to http://photobucket.com/, and click the big green Join Now button. It really is free, just give them an email address. If they ask for anything else, decline.

Once you have an account there, you can upload pictures to photo bucket. If you want one to put by your name, make it a square to avoid distortion.

Then you need to get the link to the photo. If you go to your photo on photo bucket, there will be several versions of links below it. Click on the one that says Direct Link. You should see a little yellow rectangle pop up that says Copied.

Now go to your profile page, and click on the section titled Forum Profile Information. The first entry is "I have my own pic". If you right click in the box there, you can paste the link from photo bucket. Then just scroll to the bottom of the form and click the Save Changes button.
Watch and Wait since 9/19/01
Increased from 1.1 x 1.9 to 1.9 x 1.9 cm as of 10/27/08
Right SSD, tinnitus, compensating balance
Dr. McKenna at Mass Eye and Ear and Dr. Barker at MGH
Translab April 8, 9 hours, 18 mm Tumor all gone SSD some facial weakness

Rich56

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Re: SML (Scarlett's) updates
« Reply #16 on: March 17, 2009, 05:01:02 pm »
Hi Nancy,

Glad to hear Millie confirmed everything, and is sending you the info.  Hope there's no more BS for you!

We will try your idea for under the name on the left, thank you very much!  However, what we were trying to do was insert a photo into the body, just as Ernie did.

Speaking of Ernie.

Ernie, YOU ARE... SUPERMAN, as others have stated!  Scarlett received "The Magic Scarf and JOURNAL".  Amazing, in just over 24 hours.  Our post office has a seperate zip code from the center of town.  I checked the mail at 10:00 a.m., no package.  I asked the post master if there was any chance it could come in later in the day, he said that on Tuesdays he does stop by the main post office in town during his lunch break, and that if something did come in he'll bring it back.  We went by later, and BINGO!  You truely are "THE MAN", Thank you!

Rich
SML (Scarlett's) other half, she had - 1.5 cm x 2.5 cm Cystic AN - Right side
Retrosigmoid on 3/18/09 at MGH in Boston, MA. Dr. Barker & Dr. Lee of MGH/MEEI
no facial issues, SSD right side, balance issues to work on.
The AN Calendar is here: http://www.my.calendars.net/AN_Treatments

mimoore

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Re: SML (Scarlett's) updates
« Reply #17 on: March 17, 2009, 05:06:02 pm »
We will be here waiting.... sending positive vibes. Care giving is a hard and exhausting job, rest and take care of yourself.
The greater universe is taking care of her. Before you know it you both will be able to put this behind you!
Thinking of you both.
Hugs 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.

leapyrtwins

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Re: SML (Scarlett's) updates
« Reply #18 on: March 17, 2009, 05:22:36 pm »
Good luck, Scarlett!  You'll do great  ;D  I'm looking forward to seeing you as a fellow postie.

Thanks for being Scarlett's scribe, Rich.  We tend to worry about our "family members" and will be anxiously awaiting your updates.
Scarlett will be in good hands, but make sure you don't neglect yourself during this whole "adventure".  Make sure you take care of yourself, too.
Surgery can be tough on family members also.

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

sgerrard

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Re: SML (Scarlett's) updates
« Reply #19 on: March 17, 2009, 07:44:57 pm »
However, what we were trying to do was insert a photo into the body, just as Ernie did.

It's the same principle as far as putting the picture on photobucket or a similar public web site. Then instead of pasting into your profile, you can paste the link between the brackets after clicking the image button. Or just copy the "IMG Code" version of the link directly into your post.

When your are composing your post, it should look something like this (ignore the word Code:):
Code: [Select]
[img]http://i335.photobucket.com/albums/m447/sgerrard_01/me5.jpg[/img]

which will look like this in the actual post:



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.

Keri

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Re: SML (Scarlett's) updates
« Reply #20 on: March 17, 2009, 09:39:56 pm »
Hi Scarlett and Rich,
I don't think I've 'met you' yet. I had translab about 7 weeks ago. Time flies, and I'm doing much better now.
Rich, do take care of yourself tomorrow. I didn't realize this until he talked about it after the surgery, but waiting for 8 or so hours (while I was in surgery) really did take a stress toll on my husband. I think he was more upset about the surgery than I was!
Scarlett, I hope all goes well with you and that when you're recovering you'll rest a lot too and take it easy. It is difficult to deal sometimes with the fatigue. But it gets better.
Thanks for keeping us posted! Good luck on getting your photo on here - as you can see, I haven't quite dealt with that either.
See you on the postie side of life!
Keri
1.5 left side; hearing loss; translab scheduled for 1/29/09 at Univ of MD at Baltimore
My head feels weird!!

EJTampa

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Re: SML (Scarlett's) updates
« Reply #21 on: March 18, 2009, 10:45:57 am »
Scarlett and Rich,
 
I am SO glad you received the scarf and journal in time!  I know how much that lifted my spirits when Kim sent them to me!
 
Today is surgery day, and I want you to know that my prayers are with you today.  I am sending positive thoughts in your direction for a speedy recovery.  And Rich, I think you have the hard part today.  Waiting for the word to come from the Doctor has got to be way harder than sleeping on the table :).  Hey, I can say that.  I was the one sleeping on the table 2 weeks ago!  I really do mean it, waiting for news has got to be hard.
 
Looking forward to hearing from you BOTH soon,
 
Ernie
-1.3 X 0.8 cm AN in the right cerebellopontine angle extending into the internal auditory canal.
-Retrosigmoid Surgery with Dr. Bartels and Dr. Danner at Tampa General 3/5/2009.
-Had to cut hearing nerve to get "sticky" tumor, so SSD right side.

Vivian B.

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Re: SML (Scarlett's) updates
« Reply #22 on: March 18, 2009, 03:46:35 pm »
Hi Scarlett,

I am new to the forum. I wanted to wish you well on your upcoming surgery and recovery.

Vivian
CPA AN(most likely meningioma) 1.6cm by 1.5cm by 1.9cm diagnosed early March 09. Watch and Wait.

Rich56

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Re: SML (Scarlett's) updates
« Reply #23 on: March 18, 2009, 10:31:38 pm »
Hi Everyone,

I just got home.

Scarlett is okay! 

I know, like myself, some like a little more detail so here we go:

They took her in at 5:45 a.m.
The surgery itself began at 9:09 a.m. to 6:44 p.m. (about 9 ½ hours).
She was moved to the Neuroscience Intensive Care Unit at 8:10 p.m.
We were aloud in to see her at 9:00 p.m.
Dr. Barker was able to remove the entire tumor, which was benign (spelling?).
She currently shows no signs of facial paralysis at all.
Right ear audio nerve was cut because it was too involved with the tumor.
Balance nerve was supposed to be cut however in my meltdown I forgot to confirm that.
She was in good spirits, and looked great considering, “The Magic Scarf� did it’s thing, and she appeared very happy with the outcome.
A good friend, like family, who is a nurse at another Neuroscience Intensive Care Unit came by and joined us when we went up to see Scarlett.  She did her own preliminary evaluation, as she would her own patients, and liked what she saw.
We only stayed about 20 minutes.  I wanted her to rest.  A little more kiss and cry, and off we went.
Left Boston at 9:45 p.m.
I got home at 11:35 p.m. after dropping off my sister-in-law.

Time to get something to eat.

Thank you all for your prayers, and good wishes!

Rich
SML (Scarlett's) other half, she had - 1.5 cm x 2.5 cm Cystic AN - Right side
Retrosigmoid on 3/18/09 at MGH in Boston, MA. Dr. Barker & Dr. Lee of MGH/MEEI
no facial issues, SSD right side, balance issues to work on.
The AN Calendar is here: http://www.my.calendars.net/AN_Treatments

anissa

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Re: SML (Scarlett's) updates
« Reply #24 on: March 18, 2009, 11:06:02 pm »
I'm so happy to hear that Scarlett is out of surgery and ok!  I hope you both get a good nights rest now.  Thanks for the update!
Anissa
2/11/09 Diagnosed AN 2.1cm
2/26/09 Consult with Dr. Clough Shelton, U of Utah
4/1/09 Translab with Shelton & Couldwell
--little teensy bit of tumor or cells on facial nerve, stuck! No facial weakness, Rt side SSD
4/8/10 1-yr MRI, "Looks great!"

sgerrard

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Re: SML (Scarlett's) updates
« Reply #25 on: March 18, 2009, 11:10:37 pm »
Excellent news, thanks Rick. And thanks, Scarf. Rest well, postie Scarlett.

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.

stoneaxe

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Re: SML (Scarlett's) updates
« Reply #26 on: March 18, 2009, 11:51:58 pm »
Great news....get some sleep... :)
Bob - Official Member of the Postie/Toasty Club
6mm AN treated with Proton Beam Radiosurgery in March 2004
at Mass General Hospital, Dr's Loeffler and Chapman
Cut the little bugger out the second time around in 2009..translab at MGH with Dr's McKenna and Barker.
http://www.capecodbaychallenge.org

LADavid

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Re: SML (Scarlett's) updates
« Reply #27 on: March 19, 2009, 12:00:32 am »
Great news, Rich.  Please give Scarlett out best.  And if you get a chance, please take a scarf picture to share.  It's sort of a tradition around here. (Note to self: start thread with scarf pictures).

David
Right ear tinnitus w/80% hearing loss 1985.
Left ear 40% hearing loss 8/07.
1.5 CM Translab Rt ear.
Sort of quiet around here.
http://my.calendars.net/AN_Treatments

NancyMc

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Re: SML (Scarlett's) updates
« Reply #28 on: March 19, 2009, 05:22:24 am »
Congratulations!  Excellent results.  Tell Dr. B I'm ordering up another one just like Scarlett's in three week's time!
Nancy  :D
Watch and Wait since 9/19/01
Increased from 1.1 x 1.9 to 1.9 x 1.9 cm as of 10/27/08
Right SSD, tinnitus, compensating balance
Dr. McKenna at Mass Eye and Ear and Dr. Barker at MGH
Translab April 8, 9 hours, 18 mm Tumor all gone SSD some facial weakness

EJTampa

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Re: SML (Scarlett's) updates
« Reply #29 on: March 19, 2009, 06:19:35 am »
Hi Rich and Scarlett,
 
We seem to be having a good period of great outcomes!  Prayer, family, friends and the scarf go a long way to lifting spirits and ensuring a positive outcome.  I was so relieved to read your post this morning!  And I agree, take pictures! :)
 
Ernie
« Last Edit: March 19, 2009, 09:48:17 am by EJTampa »
-1.3 X 0.8 cm AN in the right cerebellopontine angle extending into the internal auditory canal.
-Retrosigmoid Surgery with Dr. Bartels and Dr. Danner at Tampa General 3/5/2009.
-Had to cut hearing nerve to get "sticky" tumor, so SSD right side.