Author Topic: Very brief update!  (Read 3096 times)

DLM4me

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Re: Very brief update!
« Reply #15 on: April 20, 2009, 10:12:38 am »
Thanks everybody!

I've been so profoundly exhausted that I really haven't had the energy to post again.  It's like one day I'll post on one forum, one day I'll answer a couple e-mails, one day I'll post on another forum, and so on.  So it's rather slow going!

Let's see...  Dr Brackmann didn't want to release me until at least the next day, but after two visits from Dr Stefan we busted out of there! :D  So seven days it was, and it felt great to get back home.  I have to say that of all the [considerable] experience I've had with hospitals, this one tops all in terms of how to do it right.  There was not ONE staff member--from the "lowliest" (like housekeepers) to the loftiest (neurosurgeons)--who ever showed the slightest degree of grouchiness, abruptness, or not having time for me.  EVERY face, around the clock, was cheerful, friendly and warm.  What a wonderful thing to see.

At some day post-op (Nancy may recall better than I do!), I did have a CSF leak and needed additional stitching up, but that was the extent of any complications. No biggie at all.

My face, on the other hand...  Oh dear.  Okay, I KNEW that facial paralysis was a very real possibility and I was NOT surprised when it happened. BUT, it got worse and worse as each day went by.  I am now MUCH more paralyzed [on the right] than I was 10 days ago.  Friday we went to have the stitches removed and Dr Bassim (am I spelling that right?) reassured me that despite the worsening we KNOW that the nerve is intact, for two reasons. 1) I woke up with better function than I have now. 2) We reviewed the reports from surgery where they monitored and tested the nerve, and it was all good.  So the nerve can't be severed. :)  It's just a matter of time.  Meanwhile, I'm unable to close my right eye so we're using a combination of drops, tape, moisture patch, etc., to keep it from being injured.

As expected they removed the right vestibular nerve, so balance--or, more accurately, LOSING my balance!--is a big issue right now.  They did their best to salvage the hearing on that side but we won't know for a while yet just what I'll end up with.  Right now?  It sucks.  Big time.  Over the din...the ROAR of the tinnitus on that side, I honestly can't make anything out.

Nancy came to visit and it was SO FUNNY that we had the same room!  We're going to compare photos our respective partners took out the window of the Hollywood sign and Griffith Observatory--they should be identical!

We worked with physical therapists on walking and balancing, and I went home with a walker that I should only use when no one else is here.  When I'm not alone, I'm using a cane on one side and a human on the other.  I'm pretty unsteady/wobbly, but I feel like I'm making some progress each time we go outside for one of our jogs around the neighborhood.  (Our really long jogs...all the way to the back fence and back...at a very slow clip!)

I know there's more but this is long and boring enough for right now!  Thanks again for the good thoughts and prayers.


Middle fossa craniotomy 04/08/09, Drs Brackmann, Schwartz, et al, St Vincent/HEI in Los Angeles.

Pooter

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Re: Very brief update!
« Reply #16 on: April 20, 2009, 10:28:50 am »
Thanks for the update..  Sounds like you're doing very well.  Glad you're finally out of the big house.  :)

Don't worry about the facial weakness thing.. Like you, I knew about it going in but was shocked when I came out.  Unfortunately, just time (and some facial exercises) will help there.  It just plain takes a long time for facial weakness to get better sometimes.  I'm 2 weeks shy of 1 year and I'm still getting improvement.  It's just painstakingly slow at times.  Knowing that going in makes all the difference. 

Get lots of rest.. you deserve it. 

Best of all, welcome to postieland!

Brian
Diagnosed 4/10/08 - 3cm Right AN
12hr retrosig 5/8/08 w/Drs Vrabec and Trask in Houston, Tx
Some facial paralysis post-op but most movement is back, some tinitus.  SSD on right.
Story documented here:  http://briansbrainbooger.blogspot.com/

"I must be having fun all wrong!"  - Roger Creager

Kaybo

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Re: Very brief update!
« Reply #17 on: April 20, 2009, 10:55:22 am »
DLM~
Sounds like you are doing well.  Glad that you are home.  Put your cane in, put your cane out... ;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!

Pooter

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Re: Very brief update!
« Reply #18 on: April 20, 2009, 10:58:16 am »
Do you shake it all about now?  So early after surgery?  ;)

Brian
Diagnosed 4/10/08 - 3cm Right AN
12hr retrosig 5/8/08 w/Drs Vrabec and Trask in Houston, Tx
Some facial paralysis post-op but most movement is back, some tinitus.  SSD on right.
Story documented here:  http://briansbrainbooger.blogspot.com/

"I must be having fun all wrong!"  - Roger Creager

NancyMc

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Re: Very brief update!
« Reply #19 on: April 20, 2009, 12:25:18 pm »
DLM, my same day surgery buddy!
Yippee!  We're in exactly the same boat on the facial thing.  You can check my latest update from this morning's visit for stitch removal (Spa Day thread).
Glad you're out of there and so upbeat.
Ain't it grand to be on the other side?
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

Jim Scott

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Re: Very brief update!
« Reply #20 on: April 20, 2009, 02:11:58 pm »
DLM ~

Kudos on your hospital release.  I was pleased to learn that you had such a positive experience at HEI.  I think we can all commiserate with you on the shock and inconvenience of the temporary facial paralysis you're dealing with and, of course, we're rooting (and praying) for you to keep improving in the days/weeks/months ahead.  That your doctor's were able to assure you that the nerve is intact is very encouraging and presages a good outcome.  Regaining your balance ability is a bit of a chore but you can do it, just as so many others have. 

Messages from 'posties' can never be boring and I for one, have never thought any post (especially my own) was 'too long'  :)  Rest, heal and rest some more.  Post as you can.

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

moe

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Re: Very brief update!
« Reply #21 on: April 20, 2009, 08:30:13 pm »
Welcome home DLM.
Does DLM really stand for "dead like me?"
We've been guessing.
Sorry to hear of the face issues, but like Pooter says, it is slow going and it should return.  Quite a shock though, I'm sure.
Listen to your body and walk, rest, nap, eat, repeat cycle!
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

DLM4me

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Re: Very brief update!
« Reply #22 on: April 20, 2009, 08:57:34 pm »
Yes, DLM stands for Dead Like Me, which was one of the most innovative, unusual, truly unique shows to come along in ages.  It was on Showtime and I loved it.  Then after only two seasons it was canceled when some new moron came in to run Showtime.  I was one of many who dropped Showtime as a result.  >:(

About the Hokey Pokey: I LAUGHED out loud the first time I read [pre-op] that I should try doing it.  It just conjured up such a ridiculously silly vision of me--barely able to stand up without losing my balance--attempting the Hokey Pokey.  And I've laughed every time since!  Reading it, hearing it, whatever, it just cracks me up.  Oh, when we were working with the physical therapists in the hospital and they showed us some side steps to work on for balance, my husband started referring to that as dancing in the hallway...so, of course, the natural extension was to say we were attempting the Hokey Pokey. :D


Middle fossa craniotomy 04/08/09, Drs Brackmann, Schwartz, et al, St Vincent/HEI in Los Angeles.

Kaybo

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Re: Very brief update!
« Reply #23 on: April 20, 2009, 09:10:16 pm »
DLM~
I felt so bad - insensitive - after I typed that.  I'm glad it has given you such great laughter and joy.  Have you seen Bedtime Stories?  That is what we had just watched and the girls kept repeating that line about the Hokey Pokey - I guess it was just on my mind!!
Glad you doing well and attempting the HP Shuffle!!

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!

MAlegant

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Re: Very brief update!
« Reply #24 on: April 25, 2009, 04:15:16 pm »
DLM,
So glad you are home and on the mend.  You sound like you're doing very well.  Rest, walk, eat, rest, you know the drill.  (I had very loud noises in my ear and was certain my hearing was gone, but in the end, it's still here!)
Best,
Marci
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.

anissa

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Re: Very brief update!
« Reply #25 on: April 28, 2009, 11:51:49 am »
DLM, so glad to hear from you!  I'm glad that you were able to "bust outta there" when you did.  Part of me wishes I'd have had my surgery done at HEI just to know what and who you all are talking about!  Keep on taking good care of yourself and everything will come around in time. 

Anissa
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!"