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Author Topic: SML (Scarlett's) updates  (Read 52921 times)

NancyMc

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Re: SML (Scarlett's) updates
« Reply #75 on: March 23, 2009, 08:46:36 am »
Scarlett,
I love beautiful smiles.  I'll see him again on the 2nd for pre-op and will pay attention or even better try to make it happen.  Being on the neuro-oncology floor was a bit unpleasant, and I imagine he must maintain a level of seriousness in the office when the cancer patients and family are present.
Thanks for the continued information flow.  You must have an armload of bottles sent home with you or, heaven forbid, had to stop at  the pharmacy on the way home from the hospital.  Oh, they do have one right there, so perhaps before leaving?
Your recovery sounds divine!  Did you read Joebloggs latest, just so you don't get frightened, and Ernie's comforting reply?
Good luck!
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

EJTampa

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Re: SML (Scarlett's) updates
« Reply #76 on: March 23, 2009, 09:33:28 am »
I know every physician and every center is different, but I was blown away by how organized Dr. Bartels office was in Tampa.  Walgreens called our house to let us know that our prescriptions were ready to be picked up.  This is about 3 or 4 days before my surgery date, so I assumed it was one of Isabels prescriptions.  I called her at work and told her that her meds were ready.  She was confused, since she didn't think she had any either.
 
Turns out that the meds were called in for me.  Percocet, Decadron (I didn't get steroids in the hospital, mine were started at home), Something for my stomache, eye drops (prescribed, but really over the counter), and a thicker eye ointment.  We filled all but the eye medicines, figuring we'd wait and see how I came through the surgery first.  I asked about the meds at my post-op appointment, and they told me they do that so I'm good to go when I get home.  I didn't need to take anything to the hospital with me.
 
Rich and Scarlett,
 
I think it's important that I reiterate that I am feeling great!  I let you know about my brief bouts of head stuffiness so you will know to expect it, even after you start feeling better.  I've been going to bed around 10:30 each night although I read for a bit before going to sleep. I get up around 8 AM and eat some breakfast before going for my morning walk.  Rest isn't something that my body has been asking me for.  I appreciate the thoughts and concerns, but it is time for the attention to turn toward the both of you, as well as those others who really need it.
 
I know I shouldn't, but I feel almost guilty about my recovery.  It's so unfair that others struggle so much.  Am I 100 percent?  No.  Even beyond the balance issues, I'm not 100 percent.  Would I be happy living the way I am now even if nothing else got better?  Yes!  I am thankful and greatful for how I feel today, and would be 100 percent satisfied if this is the new me!
 
Sorry to ramble, but while I appreciate thoughts and prayers very much, they have already done their job! 
 
Congratulations on your first partial post Scarlett!  I remember my first post, moving the laptop back and forth trying to get the letters to focus :) .
 
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.

joebloggs

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Re: SML (Scarlett's) updates
« Reply #77 on: March 23, 2009, 04:33:05 pm »
Hi Scarlett (and Nancy and Ernie, and all!!),

Just saw Nancy's post - don't stress too much about my wee setback, that's all it is a tiny hurdle!  From what I understand to get the old eye issues 12 days out of surgery is not that common, so you're probably going to rock it... besides it's totally temporary I'm sure of it and I'm setting my alarm every 6 hours for my steroids to make sure of that!  Other than that I'm absolutely rocking things like you - a few days ago using the computer wasn't that fun but now I'm much like normal so you'll be fine too soon.  I was on oxycodon (a morphine derivative, not sure what it's called in the US) for the first two days after surgery then I got changed to paracetamol (we call it panadol, I think you call it tylenol) and am now only taking it two pills in the morning and two at night (think will stop in the next few days as can't really be bothered and not in pain!).  Other than that take a pill for balance which I've almost run out of so that'll be the end of that and my steroids (plus tummy pills because they're supposed to make you sick but so far so good!).  In a week, touch wood I'll be drug free and rocking the rest of recovery.  And all this without the bloody magic scarf which apparently needs to grow a twin so it can take a trip out to the colonies occaisionally!  All is well Scarlett, and it will be well with you!

xxx

P.S.  Re sleeping positions - you'll probably have a big turban on your head post surgery - or I did anyway, tres uncomfortable to sleep in but you find a way... I'm now sleeping predominantly on my non AN side but sometimes I wake up and I've turned to the AN side without any probs - haven't found any brains on the pillow yet anyway!
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Right sided AN 2.7cm at last MRI.  Hearing loss/facial numbness.  Translab scheduled March 11th 2009.  Translab at Royal Melbourne Hospital, Australia successful!  Total tumour removed, SSD, no facial issues, numbness has left the building, balance issues but they'll get better and I'm loving life!

NancyMc

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Re: SML (Scarlett's) updates
« Reply #78 on: March 24, 2009, 07:19:57 am »
Hey, JB!  We were once a colony, too, ya know.  Aimee can fill you in on that story, being a Brit, isn't she?
But back OT, what the heck is a med for balance?  Can't imagine!
Thanks for all the encouraging words.  Now if I were only 32 instead of 58, I'd be certain of this resiliency you claim for me.  I'll do me best, darlin'!

Now, Ernie, I'm getting a little annoyed at your morning walks and your "too hot" outside, having to wait til evening for a walk.  It's like 20 degrees outside here, and ice and snow everywhere except the driveway and road which are mud.  I walked my dog the other day when we had a freak 50 degree hour, and I had to ban him from the house other than the MUD room for two days.  Scarlett and I are pretty much housebound, and I should think a mall walk would be overstimulating should there be a mall within fifty miles of here, so . . .   
My Dave's parents live near Tampa and can't imagine why anyone would live in NH, so I suppose it's our own fault.  Sorry, just so sick of winter and sitting inside looking out. 
My spa day is coming, facelift and lipo on the 8th.

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

EJTampa

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Re: SML (Scarlett's) updates
« Reply #79 on: March 24, 2009, 07:30:58 am »
Sorry Nancy!  I'll be sure to report temperatures in Celcius from now on!  Makes it seem colder!  Ok, it's 9:30 AM and time for my morning walk.  It's much cooler this morning, so I waited for it to warm up a bit.  It's 16 degrees now, so off I go!
 
Scarlett and Nancy - The weather will be improving soon.  March is on its way out, and Spring is just around the corner!  I grew up in the Boston area and went to college at Lyndon State College in Vermont.  My mothers parents lived in Burlington Vermont, my brother and a niece live in New Hampshire, and my parents still live in Massachusetts.  I'm no stranger to New England weather :).
 
Keep warm!
 
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 #80 on: March 24, 2009, 09:28:16 am »
Ah!  Much better.  A brisk walk in the crisp early spring air.  Try not to work up a sweat.  Got your snowshoes or Wellies on there, Ernie?
I'm going to try to get out with my new hiking poles (canes are so old school) today and slog around if it breaks 0 (Celsius, that is).  Where in NH?  And I hope they all come down for a visit every winter.
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 #81 on: March 24, 2009, 05:07:27 pm »
Hi all,

Just a word for all who are feeling good after surgery… Don’t forget to stay ahead of the pain. I went a little too long between pain meds yesterday and ended up with a monster headache last night. I finally have it under control again (I don’t like to take meds if I’m “feeling goodâ€?) and believe me I will not let that happen again!  Since there are no refills written on the bottle, I mistakenly thought that I would have to make what was there last through recovery. Not so, if you need more, call the doctor.

Right now, I am enjoying just laying on the couch with one kitty cat curled on top keeping me warm. Looks like a beautiful day outside, but like Nancy .. I will wait for the warm spring temperature before venturing on walks outside, currently 4 degrees.

JB, I hope your set back is short lived. I didn’t have the full headdress, just a bandage in back which they decided to RIP off when they put me in my regular room. No brains on my pillows either, so I guess all is well!  ;D

TTYL,

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 #82 on: March 24, 2009, 07:01:25 pm »
Hi Scarlett,
 
Lots of pain meds require a re-write for more.  In fact, they can't even be called in.  You actually have to go pick up the script.  Pain wise, I guess I was lucky.  I still have most of my pain pills now rotting in a bottle, which is a good thing.  Like you, I hate taking pills.  I had to take a couple Tylenol before walking this morning, but that did the trick.  I still get the stabbing pain somewhere in the surgical area, but it's short lived (seconds) and infrequent (once or twice a day).  All part of the healing process, I'm betting.
 
I think congratulations are in order for you Scarlett.  Isn't this the first update you did all on your own? :)  I could be wrong, I didn't look back.  Keep up with those meds and let the cat spoil you for a while.  There'll be time enough for walking when the weather warms up.
 
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.

Keri

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Re: SML (Scarlett's) updates
« Reply #83 on: March 24, 2009, 08:22:30 pm »
Hi Scarlett,
Glad you're doing better all the time. I agree with staying ahead of the pain.. my husband kept telling me that when i felt like trying to tough it out. he said 'this is the only time you get to take percocet... go for it' (well ,within reason). now it's tylenol that does the trick.
and, regarding the 'feeling great after surgery.' i'm 8 weeks post now. i do feel better. but then i have a bad day and get so tired or headache-y. things are so much better than before, but it's still tough at times.
good to see the progress, though, in so many of you (ernie, scarlett, JB - i did it without the scarf too! i guess i didn't catch on to that until i was post op)!

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 #84 on: March 24, 2009, 08:58:41 pm »
Ernie, and Keri,

Scarlett typed up the post herself.  I did the spell check.  I told her to take her time, and when she’s done I'll clean it up a little.  I think she did great!  As we all know, the experience is different for everyone.  She is still trying to find what works best for her, with regard to the pain meds.  The prescription says 1-2 percoset every 4 hours, and she’s trying to only take 1 at a time.  It seems that 2 most of the time, is what she’s going to have to do.

I’m so glad your both coming along,

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

sgerrard

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Re: SML (Scarlett's) updates
« Reply #85 on: March 24, 2009, 10:26:16 pm »
Take your medicine, Scarlett.  :o

We had to bug my Dad to take pain medicine after his hip surgery; he would have preferred gritting his teeth and toughing it out. Managing pain helps you heal faster and better; your body has enough to deal with without having to brace against pain as well.

Laying on the couch in lazy repose with a purring cat in your lap sounds about right. :)

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.

EJTampa

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Re: SML (Scarlett's) updates
« Reply #86 on: March 25, 2009, 07:18:40 am »
Quote from: Rich56 on March 24, 2009, 08:58:41 pm
Scarlett typed up the post herself.  I did the spell check.  I told her to take her time, and when she’s done I'll clean it up a little.  I think she did great! 

She did do great and that was close enough to her first post by herself!  I don't know why I escaped the fatigue post surgery.  That certainly doesn't seem to be the norm.  Scarlett, you are doing great to be posting daily like this.  Just remember what others have said, get your rest, and take your meds!
 
Oh, and don't forget to take more pictures too.  Did you get a good picture of your scar?  Also, did you have staples or stitches?  I noticed there doesn't seem to be a standard as far as that goes.
 
Ernie
Logged
-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.

stoneaxe

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Re: SML (Scarlett's) updates
« Reply #87 on: March 25, 2009, 09:54:13 am »
Great to hear things are going well. I'm sure the cat is glad to have his/her staff available for petting... ;)
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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

SML

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Re: SML (Scarlett's) updates
« Reply #88 on: March 25, 2009, 04:14:58 pm »
Quote from: sgerrard on March 20, 2009, 09:26:10 am

Back on topic: Scarlett, what's your favorite color? :)

Steve
 
Well Steve, I’ve been giving this some very serious thought…
I have a feeling it will match my hair color beautifully ;D

Thanks, Scarlett

Style - Rolled Brim Hat

Swish Bulky Yarn - Squirrel Heather

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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.

NancyMc

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Re: SML (Scarlett's) updates
« Reply #89 on: March 25, 2009, 04:36:08 pm »
AAAAAH!  I love the photos of yarn and wildlife!  What a talent!  Great color choice.
Hope you're feeling great today.  The nice weather sure helps lift the spirits.
How about some more photos of you and perhaps your kitty cat?
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
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