Author Topic: DLM4me's Update  (Read 15319 times)

Rich56

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Re: DLM4me's Update
« Reply #30 on: April 12, 2009, 10:59:20 pm »
Thanks Nancy we really appreciate you keeping us updated :)

Glad to hear that she's in good spirits, and will be going home soon.

Keeping her in our thoughts for a speedy recovery,

Rich & Scarlett
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: DLM4me's Update
« Reply #31 on: April 13, 2009, 05:47:03 am »
Sounds as though we have the same symptoms resulting from surgery on the same day . . . facial weakness and double vision.  I wonder if we should track same day surgery outcomes?  ;D
My DV is gone.  Working on FW.  Dressing off today up at Mom's.  It will be nice to sleep without the lump.
Great news!
N
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

leapyrtwins

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Re: DLM4me's Update
« Reply #32 on: April 13, 2009, 05:50:23 am »
Excuse the hijack, but I just had to say I'm so glad your double vision is gone, Nancy.  I know from experience how aggravating it is.

Is the dressing in question the one you got post op?  I've never heard of anyone wearing theirs so long - mine was removed about 24 hours post op - is this just your doctor's practice? or did I miss something along the way that required you to wear it longer?

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

Kaybo

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Re: DLM4me's Update
« Reply #33 on: April 13, 2009, 06:37:43 am »
DHM~
I felt really bad about the Hokey Pokey comment after I did it - I hoped it didn't come across insensitive!  However, NOW I am kind of proud of it - maybe it can be the official Acoustic Neuroma Dance!! :D

K
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

NancyMc

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Re: DLM4me's Update
« Reply #34 on: April 13, 2009, 06:42:27 am »
Jan,
When I asked to be discharged on day 3 post-op, they said they like to keep the pressure on for 4 to 5 days.  I told them my mom is a retired physician and loves gory stuff and would be pleased to remove it on Monday.  They said Fine!
I'm glad for the loss of double vision, too.  Now I can begin the vestibular exercises, some wonky headedness is becoming evident.
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

NL

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Re: DLM4me's Update
« Reply #35 on: April 13, 2009, 12:11:41 pm »
Hi Nancy,

I'm so glad that you're doing well and your double vision is gone. I'll pass the news on to DLM4me - hopefully she'll be right behind you with her progress.

And K, seriously...she LOVED it. ;D

Nancy (L)
1.6 cm left AN diagnosed Oct. '07
1.9 cm on 2nd MRI, May '08
Retrosigmoid surgery at House Clinic/St. Vincent's on 8/6/08
(no post-op dizziness, nausea, facial or balance issues)
Thankful for a fantastic team of doctors - Dr. Rick Friedman, Dr. Marc Schwartz, & Dr. Michael Stefan

Captain Deb

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Re: DLM4me's Update
« Reply #36 on: April 13, 2009, 12:48:23 pm »
DHM~
I felt really bad about the Hokey Pokey comment after I did it - I hoped it didn't come across insensitive!  However, NOW I am kind of proud of it - maybe it can be the official Acoustic Neuroma Dance!! :D

K

Silly girl! Don't you know that the official AN Dance is the "Bobblehead Strut?" ;D

Glad you got your headwrap off, Nancy, and welcome home!

Capt Deb 
"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

kathylittlejohncobb

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Re: DLM4me's Update
« Reply #37 on: April 13, 2009, 01:18:24 pm »
Dear DLM & Nancy,
So glad to hear that you are both doing well!  Keep us posted during your recovery!
Kathy
Retrosigmoid at House/St. Vincent's in Los Angeles 4-4-06; partial hearing saved on AN side;
Dr. Marc Schwartz & Dr. Rick Friedman, my heroes!

leapyrtwins

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Re: DLM4me's Update
« Reply #38 on: April 13, 2009, 06:09:14 pm »
Personally, Kaybo, I thought the hokey-pokey comment was hilarious  ;D

I was just sorry I didn't think of it.  Of course if I would have, Lori would have found a way to take credit for it  ;)  :D

Nancy -

it must have been great growing up with a mom who likes gory stuff - puts me to shame  :-[  as I'm a mom who would rather bypass that kind of stuff  :P

I remember the mastoid bandage being so tight I was immensely thankful it was removed on day 2.  Kudos to you for sporting yours so long.  Glad that's over with  ;D

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

NL

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Re: DLM4me's Update
« Reply #39 on: April 13, 2009, 10:22:10 pm »
I thought the hokey-pokey comment was hilarious  ;D
That is EXACTLY what DLM4me said today!

In fact, she wanted me to let you know that while doing the side steps the PT was giving her today, she was trying very hard to actually do the hokey-pokey.  ;)

I went to see her at the hospital today - we laughed that she had the exact same room I did eight months ago. The room has a great view of the sunset and the Hollywood sign (and the most strangely designed bathroom you've ever seen). But she'll be staying there another day so the docs can do a CT scan due to an increase in her post-op symptoms: dizzyness, facial weakness, and double vision.

She still has an incredibly upbeat and positive attitude, and appreciates your support AND humor more than you know.  :)
1.6 cm left AN diagnosed Oct. '07
1.9 cm on 2nd MRI, May '08
Retrosigmoid surgery at House Clinic/St. Vincent's on 8/6/08
(no post-op dizziness, nausea, facial or balance issues)
Thankful for a fantastic team of doctors - Dr. Rick Friedman, Dr. Marc Schwartz, & Dr. Michael Stefan

NancyMc

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Re: DLM4me's Update
« Reply #40 on: April 13, 2009, 11:45:05 pm »
That's great!  Same room!  I was thinking about calling the MGH Neuro ICU today to send Steve well wishes and compare notes.
I had increased symptoms post-op and didn't get a CT scan.   :'(  Tell her double vision will be gone very soon.  The rest perhaps a little (I hope) longer?
Time for 'roids.
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

EJTampa

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Re: DLM4me's Update
« Reply #41 on: April 14, 2009, 12:21:20 am »
Time for 'roids.
Nancy

Is that STEroids or HEMORRHoids? :)
 
I couldn't resist!
 
Signed,
 
Jan
-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: DLM4me's Update
« Reply #42 on: April 14, 2009, 04:44:53 am »
Believe me, that's not even funny right now.
JB suggested an antidote in AU that helped her.  I'm googling it right now to call on-call nurse for rx this AM.
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

Kaybo

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Re: DLM4me's Update
« Reply #43 on: April 14, 2009, 06:15:25 am »
I'm glad DLM is going for the Hokey Pokey and is enjoying that comment so much!  I'll have to see if I can come up with something else from the wacky world of little girls!!

Hope today is better and you do get to go home!!

K
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

leapyrtwins

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Re: DLM4me's Update
« Reply #44 on: April 14, 2009, 06:33:58 am »
I thought the hokey-pokey comment was hilarious  ;D
That is EXACTLY what DLM4me said today!


Sounds like she's a girl after my own heart!  ;D  Any chance she'll make it to the symposium?  Lori, Kaybo, and I could use humor like that  :D

Freaky about having the same room as you  :o

Ernie!   :(  Stop trying to get me in trouble!!  :(  Lori is going to be so upset that you are taking her job away!  ;)  :D

I bet you picked on your sisters as kids.  Right???

Jan - the REAL one
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