Author Topic: SML (Scarlett's) updates  (Read 51459 times)

EJTampa

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Re: SML (Scarlett's) updates
« Reply #120 on: March 30, 2009, 09:02:50 am »
I made copies of all the pages in the journal up to it's journey to me.  If anyone is interested, I can scan them and post the pictures in a separate thread.

I'd like to see the journal pages too. If it is too big to post as pictures, maybe it can be send around as an email attachment or something.

Steve

Ok, Just scanned them in and will post a new thread.  We'll see how they look from photobucket, but PM me if you want them as email attachments instead.
 
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.

NancyMc

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Re: SML (Scarlett's) updates
« Reply #121 on: March 30, 2009, 10:16:59 am »
headed into da tube o' gloom in 30
called mili to ask why I don't have a hearing test on thurs
first she said I was having 8th nerve not 7th but then she said i am having different kind of surgery
I asked if it was retrosigmoid vs translab.  She said yes.  And I thought that was the case.  She makes me nervous!
ok better go in there
sorry . . . From iPod
nancy
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

SML

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Re: SML (Scarlett's) updates
« Reply #122 on: March 30, 2009, 12:05:46 pm »
Nancy,
Hope you had some good tunes going during your MRI. I listened to Tom Petty, but only because they didn't have Dan Fogelberg to pick from.
Millie will never change, but trust me, I would never trade Dr. Barker for the world. Millie is just part of the package and binds us together in yet another way... giving us a few extra grey hairs. From my experience, since my surgery, she has all but faded from my memory. :)

Scarlett
SML(Scarlett)-Massachusetts
1.5 cm x 2.5 cm Cystic AN - Right side
Retrosigmoid 3/18/09 at MGH in Boston,MA.
Dr. Barker - Neurosurgeon, MGH - Dr. Lee - Neuro-Otology, MEEI
no facial issues, SSD right side, balance issues to work on.
Outstanding Surgeons, I'm very happy with the results.

EJTampa

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Re: SML (Scarlett's) updates
« Reply #123 on: March 30, 2009, 12:15:08 pm »
Nancy,
Hope you had some good tunes going during your MRI. I listened to Tom Petty, but only because they didn't have Dan Fogelberg to pick from.
Millie will never change, but trust me, I would never trade Dr. Barker for the world. Millie is just part of the package and binds us together in yet another way... giving us a few extra grey hairs. From my experience, since my surgery, she has all but faded from my memory. :)

Scarlett


Tom Petty is one of my all time favorites! :).  FWIW, I was never given a choice of music.  They rolled me in and fired up some Mariah Carey (sp?).  I HATE THAT LOUD SCREAMY MUSIC!  It was SUCH a relief when the MRI machine would kick into overdrive and at least provide me some relief from the music!
 
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.

anissa

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Re: SML (Scarlett's) updates
« Reply #124 on: March 30, 2009, 01:13:45 pm »
Nancy,
Hope you had some good tunes going during your MRI. I listened to Tom Petty, but only because they didn't have Dan Fogelberg to pick from.
Millie will never change, but trust me, I would never trade Dr. Barker for the world. Millie is just part of the package and binds us together in yet another way... giving us a few extra grey hairs. From my experience, since my surgery, she has all but faded from my memory. :)

Scarlett


I put music on my phone yesterday and put Dan Fogelberg's Greatest Hits on there!!  :)  Also, some Jimmy Buffet (Songs you Know and Love), James Taylor, Amy Grant, Trisha Yearwood, Joshua Kadison...  I like Tom Petty too.
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!"

Keri

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Re: SML (Scarlett's) updates
« Reply #125 on: March 30, 2009, 10:17:09 pm »
music? i just had that banging sound. plus whatever that other noise is that's echo-y and sounds like a heartbeat. my first MRI, i thought it WAS my heartbeat amplified.
next time i'm asking for some music. except then i'd probably wiggle my feet and they'd have to tell me to be still.
1.5 left side; hearing loss; translab scheduled for 1/29/09 at Univ of MD at Baltimore
My head feels weird!!

NancyMc

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Re: SML (Scarlett's) updates
« Reply #126 on: March 31, 2009, 07:20:16 am »
Well, first of all, it was no longer the Tube O' Gloom.  They have a new Phillips machine and it was the Bun O' Fun.  They no longer offer music.
I was bumped again (Is this the new story of my life?  Get in line, Lady.) by two elderly ladies who required emergency MRIs, but it was only an hourlong wait.  Then the IV process failed as apparently I have developed a new syndrome known as "rolly" or "rolling" veins.  I hope her multiple attempts don't ruin it for next week's nurses.  I'll call for faxed results tomorrow afternoon so I can scoop Dr. Barker.  Hope that thing hasn't blossomed over the winter, attaining huge status.
I feel as though I've hijacked Scarlett's thread, but this isn't really worthy of it's own.  Maybe I should begin a countdown after pre-op day on Thursday.
Scarlett - Have fun playing Easter Bunny today, and especially getting your stitches removed.  Does that mean you can wash your beautiful hair?
How are your headaches?
Nancy
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

NancyMc

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Re: SML (Scarlett's) updates
« Reply #127 on: March 31, 2009, 09:55:12 am »
Hey, Scarlett.  Mili actually called ME today.  I forgot to ask if she'd seen you there.  She was confirming Thursday's appointment, so I guess she does eventually get around to doing her job.
Another question . . . I learned on the MGH website that it is possible to order meals for Dave.  Did you try that?  If so, was the food horrible?
Thank you.
Nancy
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

SML

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Re: SML (Scarlett's) updates
« Reply #128 on: April 01, 2009, 08:35:36 pm »
Hello everyone,

 I’ve been trying to get thank you cards mailed off to family and friends so I haven’t been on the computer too long. Richie has been conveying my prayers and good wishes to Liz, Tara and Anissa. The looking up and down while typing is still somewhat bothersome.

I did get my stitches out yesterday, but they made me wait an extra day before washing my hair!!!  OH BOY… I couldn’t wait. That is the best feeling ever! I had to keep reminding myself to go easy and I did use the baby shampoo as Jan suggested.

I did so enjoy the walk in Boston and getting to play the Easter Bunny. I didn’t actually get to see anyone (Nurses I knew or the doctors) but I had my cards attached. I found myself getting teary eyed at the ICU and Nurses station. They are all such beautiful people!

We didn’t order food for Richie at the hospital, actually we didn’t know we could. I didn’t eat too much of what I got, but not because it was bad, I just wasn’t very hungry. On about the third day is when I found myself eating a little more. They kept shoving these cards in front of me, and telling me to fill them out for my next meals. I had all I could do to focus on the card so when I saw something that looked like Turkey I circled it ( I had Turkey a lot!) I wasn’t bad though. Toward the end of my stay is when I found the chocolate cake, ice cream, yogurt, fruit … you know all the good stuff! I had prepared meals for Richie and froze them so he could have quick meals here. We have cats, so he wanted to make the drive everyday. I got my report on how my “babies� were every day as well as my fellow forumites.

Keri, with my very first MRI I was told I could not listen to music. When I went to MEEI for my second one, they had a two-page list of music to pick from. I wonder what happened that they don’t offer that anymore. It was only in January that I went. Hummm???  Unless it’s a full body tube, you’ll probably be able to get away with wiggling your toes!

Nancy, let us know when you get the package, I’ll post my journal entry after you get to read it.

Scarlett
SML(Scarlett)-Massachusetts
1.5 cm x 2.5 cm Cystic AN - Right side
Retrosigmoid 3/18/09 at MGH in Boston,MA.
Dr. Barker - Neurosurgeon, MGH - Dr. Lee - Neuro-Otology, MEEI
no facial issues, SSD right side, balance issues to work on.
Outstanding Surgeons, I'm very happy with the results.

Keri

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Re: SML (Scarlett's) updates
« Reply #129 on: April 01, 2009, 09:56:04 pm »
Hi Scarlett,
I understand about having a hard time getting on the forum and posting when you're a new postie! It's hard!
Y'all are in Boston? I'm thinking about coming to Boston because my husband is running the marathon on the 20th! there's another AN member, Laura, that's running as well (she's having surgery 4/28).
There's also an AN brunch is Worcester (I'm sure I didn't spell that right) on 4/19. I just found it... i thought about going to that if i end up coming up for the marathon. Did you and Rich know about it and/or you going?
A lot of things (esp childcare) have to come together quickly for this to work out.
Would be great to have an AN mini reunion!
Glad your recovery is going well, although you're probably still having some challenging days, or at least tired days. It's encouraging to everyone here to have your's and Rich's support!
Keri
1.5 left side; hearing loss; translab scheduled for 1/29/09 at Univ of MD at Baltimore
My head feels weird!!

Rich56

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Re: SML (Scarlett's) updates
« Reply #130 on: April 01, 2009, 11:42:35 pm »
Hi Keri,

Scarlett just went to bed, and I thought I'd check for more news on Anissa.  It's sounds like her surgery went well and Chris is probably with her right now.

So, I called into Scarlett (she's not a sleep yet) and read your post to her.  She wants me to tell you that "yes we will be there, that it would be wonderful to meet you, and hopes that the childcare issue can be worked out".  I second that emotion.  I think there is around twenty going.

Scarlett is recovering very well.  Yesterday, after going into Boston, we went to Worcester to visit a friend in rehab at UMass.  Scarlett drove home from Worcester.  I watched how she drove and asked how it was, she said it was basically the same as before the surgery.  When she looks quickly to the side, she has to give her vision a second to catch up with her eyes.  But other wise it's pretty normal.

As for our support.  If we can make someone smile or at least feel a little better, than that's a win.  Like you just did for us, thank you :)  You are an inspiration!!

Hope your recovery continues to improve (maybe you'll run with your husband next year) and that you are able to make it to the brunch,

Rich

P.S. Today (4/1/78) made 31 years that Scarlett and I have been together (married for 26) and it's been great ;D I love you dear :-*
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

sgerrard

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Re: SML (Scarlett's) updates
« Reply #131 on: April 02, 2009, 12:22:30 am »
Hi Scarlett,

It sounds like you are doing well. I can't believe it has been two weeks already!

Good for you for making the brunch, I would love to go to that one, it is three time zones away, though. I hope Keri can make it too.

Rich, you are setting the bar high as an example of how to be the supporting half. Thanks for joining in. :)

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.

Rich56

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Re: SML (Scarlett's) updates
« Reply #132 on: April 02, 2009, 12:57:54 am »
Hi Steve,

Scarlett is doing great, thanks.

We will meet one day, and it will be a pleasure.

I was looking back through the posts and saw that you had very good news a few weeks back, an unremarkable MRI, congratulations.

Thank you for allowing me to participate ;D

You have a good night,

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

NancyMc

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Re: SML (Scarlett's) updates
« Reply #133 on: April 02, 2009, 04:22:16 am »
Just a quickie, on my way out the door for pre-op day plus four+ hours of driving.

Scarlett et al,
I did not have my MRI at MEEI or MGH because they allowed me to use the open machine in Woburn.
I called the post office yesterday and told them that I have a very important package arriving today and not to leave it hanging on the mailbox in the chance of rain.  So, it should be here when I return tonight.  Thank you!
I can't believe you drove and in Worcester, too!  You're amazing.

Rich and Scarlett,
That is some fabulous togetherness.  Congratulations!

Keri,
You spelled it right!

Later,
Nancy
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

moe

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Re: SML (Scarlett's) updates
« Reply #134 on: April 02, 2009, 09:01:43 am »
WOW way to go Scarlett! Driving!
And congrats on all those years of "wedded bliss". :-*
You two sound so great.
Maureen
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty