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Author Topic: SML (Scarlett's) updates  (Read 52932 times)

SML

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Re: SML (Scarlett's) updates
« Reply #105 on: March 28, 2009, 10:44:23 am »
Good morning.

Nancy, You pretty much had my pre-op personality exactly right. Leave it to a little surgery to flip your world! ;) But, really, I’m attributing my giddiness to the relief  I’m feeling that this part of my journey is over and that I was actually able to stay on the computer long enough to type my own posts.

I had no idea the scar picture was going to freak you out like it did. Last thing I want is to upset you. But just know that unless I’m holding my hair back like that, the rest of my hair covers it completely. It does not hurt at all ( it IS very tight) but that’s all. I’m usually one who doesn’t like looking at those kinds of things either, but by looking at others who have posted their pictures, helped me prepare and I even found myself saying, “wow, they did a great job�!

Before surgery, I was comparing myself to the cowardly lion from the wizard of OZ, The Scar picture felt like I had just been awarded my Badge of Courage. I was just having one (or should I say … another…weird moment).

These day’s I’m feeling good with the exceptions of the headaches at night. I’m begining to think that being on an incline while sleeping is actually reducing the severity of them.

Quote from: EJTampa on March 28, 2009, 06:49:08 am

Well, with the weekend here, Scarlett and Rich are probably out shopping at the malls, catching a movie, and maybe riding a roller coaster or two :).
 
Ok, probably not yet.   ;D
 
Ernie
Ernie, Does doing laundry count? Hummmm…  I thought not! Well. I will be having fun today!! It is a beautiful SUNNY DAY and the temperature right now 50 Degrees F!!! Richie and I are going for a walk outside!! YEAH!!! :D

Scarlett

P.S. Nancy, PM me your address, time for the scarf to continue its magic ride.
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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.

leapyrtwins

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Re: SML (Scarlett's) updates
« Reply #106 on: March 28, 2009, 10:52:31 am »
Quote from: SML on March 28, 2009, 10:44:23 am
It does not hurt at all ( it IS very tight) but that’s all.

Just wanted to chime in and say that in my experience, your scar will be tight for a while. 

I'm almost two years post op and just recently the tightness around my scar finally disappeared.

Like you, it didn't give me any pain.  I just found it somewhat annoying.

Jan
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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

moe

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Re: SML (Scarlett's) updates
« Reply #107 on: March 28, 2009, 11:00:14 am »
Glad to hear you continue to recuperate well, Scarlett!  Don't you just love showing off your incision to others? Kind of freaks them out.
After your incision heals completely, try the Vit E treatment. Cut open the capsule and rub the oil on the incision and around.
But not for a couple months, OK?
Maureen
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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

NancyMc

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Re: SML (Scarlett's) updates
« Reply #108 on: March 28, 2009, 08:15:13 pm »
Sorry, been in Boston having fun today.  This coming week I have to drive down for my MRI on Monday and for pre-op on Thursday.  Lots of miles on the car.
Don't apologize about your scar photo.  I've seen them before.  They're just a little startling when I'm expecting to have to read small print and get a large image in my face.  I'm the only one in my family who didn't go to medical school, including my mother, and that's why.
I'll PM my address.  So excited to be the recipient of the Magic Scarf.  Thanks!
Nancy
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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 #109 on: March 28, 2009, 08:40:38 pm »
Thanks Maureen,

I’m definitely going to try that vitamin E in a few months.

Scarlett
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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 #110 on: March 28, 2009, 08:46:57 pm »
Scarlett,
 
You are doing great!  Laundry?  You couldn't get Rich to do that?  ;)  Remember, you shouldn't be lifting more than about 5 pounds right now.  My doctor still has me at 10 pounds, but I do break that sometimes (shhhh).  How'd that walk go today?  I bet it felt good to be out!
 
Nancy, congratulations on being the next recipient of the Magic Scarf!  Those who don't get the AN scarf do get a "virtual" AN scarf, so they aren't left out :).
 
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.
 
Ernie
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-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 #111 on: March 28, 2009, 08:54:28 pm »
Scarlett, your last post made me smile so big!  Ten days after surgery and you sound so bright and cheery, I love it.  I hope you had a nice walk!

Anissa

P.S. I was kind of bummed to get skipped by the scarf but I borrowed my son's and I know it'll work wonders.  I am curious about the journal and would love to see the pictures, Ernie.  :)
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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 #112 on: March 28, 2009, 09:01:12 pm »
Scarlett,
I've been kind of proud of my scar too! I never had stitches or got in a fight or broke a leg so I coudl get people to sign my cast... no, nothing like that. Although I gave the person who shaved my hair a hard time because so much was coming off, my hair covers all the shaved areas, it just looks a little uneven. If I put my hair in a pony tail, you can see remnants of my cool scar. Now my hair has grown about an 1/8" over it. It's still kind of tight, and actually hurts a bit some, but not badly. I'm 8 weeks post, don't know how long that lasts, but I can live with that a lot easier than the headaches (used to be bad, those have gotten better as well).

Glad you're improviing and that you and Rich have gotten to know so many!

Keri
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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 #113 on: March 28, 2009, 11:03:08 pm »
Quote from: EJTampa on March 28, 2009, 08:46:57 pm
Scarlett,
 
You are doing great!  Laundry?  You couldn't get Rich to do that?  ;) 

Ernie

Wait a minute, wait a minute, you got it all wrong :D :D :D  I loaded the machine, she decided how much soap she wanted since it was her mother's machine and I wasn't sure what she would want, then I continued to do the rest.  Ffffuuuu that was a close one ;D :o ;D :o ;D

We certainly have met alot of wonderful people.  I know we could never give back all that we have received, but we will most certainly give it our best shot! :) a big hug to all of you,

Rich
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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

Rich56

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Re: SML (Scarlett's) updates
« Reply #114 on: March 28, 2009, 11:24:37 pm »
Quote from: Rich56 on March 28, 2009, 11:03:08 pm
Quote from: EJTampa on March 28, 2009, 08:46:57 pm
Scarlett,
 
You are doing great!  Laundry?  You couldn't get Rich to do that?  ;) 

Ernie
Ffffuuuu that was a close one ;D :o ;D :o ;D

Rich

I mean Pheeewww :D :D :D boy that was another close one.  I was signed off and almost in bed when I realized, ---- I just stepped in another one :D :D :D

Good night everyone, and you too John boy,

Rich
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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

MAlegant

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Re: SML (Scarlett's) updates
« Reply #115 on: March 29, 2009, 07:23:34 am »
Scarlett,
Your scar looks great!  I was pretty proud of mine too, sort of like a badge of honor.  Now I'm (almost) sorry it's not visible. Continued well wishes.
Marci
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3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.

EJTampa

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Re: SML (Scarlett's) updates
« Reply #116 on: March 29, 2009, 07:30:07 am »
Having the scar for show and tell is important!  Let's say you do or say something really off the wall.  Everyone turns to you with a real strange look on their face.  You apologize, saying it was the brain surgery you had that caused you to do/say what you did.  You turn your head, move your hair, and they all go wide-eyed and understand!  Without the scar, they would never believe you  ;D  ;D  ;D
 
Ernie
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-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 #117 on: March 29, 2009, 08:19:14 am »
Quote
These day’s I’m feeling good with the exceptions of the headaches at night. I’m begining to think that being on an incline while sleeping is actually reducing the severity of them.

Scarlett,
How are you establishing the incline?  I am considering shopping for a foam wedge or whatever at Bed, Bath, . . . for that purpose.  I'll get the shower bench.
You and Rich have been especially helpful since you are so fresh and having been in the same spaces with some of the same hands providing your care.

My big worry now is that my tumor has ballooned in the last five and a half months since my last MRI.  Tomorrow will tell.

Inching my way toward the day,
Nancy
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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 #118 on: March 29, 2009, 07:00:42 pm »
Quote from: anissa on March 28, 2009, 08:54:28 pm
P.S. I was kind of bummed to get skipped by the scarf but I borrowed my son's and I know it'll work wonders.  I am curious about the journal and would love to see the pictures, Ernie.  :)

Hi Anissa,
I don’t think I could say it any better than Ernie did:
Quote from: EJTampa on March 28, 2009, 08:46:57 pm

Those who don't get the AN scarf do get a "virtual" AN scarf, so they aren't left out :).
 
Ernie
I believe your son’s scarf is going to bring you magic and joy beyond belief. To symbolically have your child to hold near to your heart, will surely bring you comfort.

Magic scarf or no, I personally will be thinking of you (as well as those still recuperating and waiting their turn) and will be sending you positive thoughts and prayers for all good things to come your way.
 
I like Ernie’s idea regarding the journal, I think that would be nice.

Keri,
Jan said the tightness from the scar area finally disappeared after about two years. I get my stitches out this coming Tuesday. Beside the tightness, I really haven’t experienced much pain at all. Hope it stays that way!

I had a beautiful walk out doors yesterday. I don’t know exactly how it happened, but some how it led me straight to a chocolate shop!! I fought it and fought it, but to no avail!  ;D

No really I went to go buy chocolates for my wonderful Dr. Barker and Dr. Lee as well as my angel nurses in Neuroscience ICU and Ellis 12.

Nancy,
One pillow at a time. Seems I have no shortage of pillows at my house! I didn’t bother with a wedge.  Like I said, no pillow shortage here.
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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.

sgerrard

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Re: SML (Scarlett's) updates
« Reply #119 on: March 29, 2009, 07:04:27 pm »
Quote from: EJTampa on March 28, 2009, 08:46:57 pm
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
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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.
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