Author Topic: Gennysmom.... oy... here we go again.  (Read 4915 times)

ppearl214

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Gennysmom.... oy... here we go again.
« on: July 27, 2006, 09:31:17 am »
Good news.. she got to sleep in her own bed last night and feed her birds... bad news, the leak resurfaced. She is now waiting on phone call from dr's to have her readmitted to do the 30 min procedure to plug the leak.  (I reoffered my belly fat.. she said this time.. she may take me up on it).  Frustration, aggrevation and any other word ending in "-ation" really does sum it up.  Will keep you all updated as I learn more... she is waiting for the 3 dr's involved to speak to get her back in. Since Thurs is usually not Op day, I *coff* highly suggested to her that all 3 of the dr's coordinate their lunch hour today and get their hinnies into the OR and get her fixed.. pronto! So she can be home (perm!) this weekend.

She asked for all funky dances, dog toots, smelly socks and any and all healing thoughts be sent her way. Updates also on her carepages.

Will advise as soon as I learn more.

Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

ppearl214

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Re: Gennysmom.... oy... here we go again.
« Reply #1 on: July 27, 2006, 11:11:54 am »
1pm EST/10am PST, Kathleen is en route back to hospital... she should be arriving in approx 1 hr.  Surgeons are coordinating schedules now to try to get her back into the OR today.  Will advise further info as I receive.

BTW... she confirmed she IS wearing her Pirate socks :) 

Thoughts and prayers all!
xoxo
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

tatianne

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Re: Gennysmom.... oy... here we go again.
« Reply #2 on: July 27, 2006, 11:27:04 am »
im new here and im not aware of the situation of the person you are speaking of however,
i will send my positive thoughts and prayers her way.
God bless her and the doctors who will be there to fix her all up.
T
Waith and Watcher
July 2006 8mm
Jan 2007 9.5 mm
Jan 2009 1.4 cmm x 5mm
GK surgery completed on May 4, 2009 in Sherbrook Quebec, hoping and praying this will be the beginning of the end of my AN......

matti

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Re: Gennysmom.... oy... here we go again.
« Reply #3 on: July 27, 2006, 12:23:20 pm »
Thank you for the update and also for leaving me a message, sorry I missed you and Beanie. When I saw carepages early this morning my heart sank.

I'm wearing my pirate socks in support of our girl!

hugs,
Cheryl

3.5 cm  - left side  Single sided deafness 
Middle Fossa Approach - California Ear Institute at Stanford - July 1998
Dr. Joseph Roberson and Dr. Gary Steinberg
Life is great at 50

marystro

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Re: Gennysmom.... oy... here we go again.
« Reply #4 on: July 27, 2006, 01:23:55 pm »
Going through Alex's drawer now for some prirate socks to wear also.  Our prayers are with her and the doctors who will take good care of her and send her home soon!

Mary
Mary
July 2006 - 22 x 18 x 20 mm
August 2006 - CK at Stanford by Dr. Chang/Dr. Soltys
February 2008 - 19 x 15 x 20 mm and stable
May 2009 - 17 x 14 x 18 mm

ppearl214

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Re: Gennysmom.... oy... here we go again.
« Reply #5 on: July 27, 2006, 08:17:10 pm »
update:

On the phone with her now.. she's home! :) YAY!!! The pirate socks (solid pink with white skulls) paid off!  It was a false alarm, not due to CSF leak but another condition to do with the autonomic (sp?) nervous system (no brain signal to be needed, functions that occur automatically). So, anyway, her nose is running and such.. she's on antihistimines to help control the situation and is being monitored VERY closely by the dr's and staff at the dr's office.  She cannot thank you enough for ALL of the support, love, huggles and all the pirate apparrel you all have donned in her health support.

Look for updates later on her carepages... she is going to type it herself!

xoxoxo
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

matti

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Re: Gennysmom.... oy... here we go again.
« Reply #6 on: July 27, 2006, 08:40:56 pm »
Thank you sweetie Phyl :-*      

Wow what a relief!!!! (and home in time to watch Big Brother)  YEAH Kathleen!!

hugs,
Cheryl

3.5 cm  - left side  Single sided deafness 
Middle Fossa Approach - California Ear Institute at Stanford - July 1998
Dr. Joseph Roberson and Dr. Gary Steinberg
Life is great at 50

ppearl214

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Re: Gennysmom.... oy... here we go again.
« Reply #7 on: July 28, 2006, 05:53:49 am »
she's done an update on her carepages.


and Raydean... I am soooooooo sorry I missed your calls last night.  Had to take Imitrex for my headaches, combined with my low does Valium for my balance and I was out like a light.  Phone next to me and missed your calls AND Gennysmom/Kathleen's call!!!!!!!!!!  :o
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Crazycat

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Re: Gennysmom.... oy... here we go again.
« Reply #8 on: July 28, 2006, 11:28:33 am »
Hey Phyl,

         How about "malpractice - ation" for another -ation word?
 Think of the radical surgeries many of us here have had and none of us have experienced a recurring problem like that. Kathleen should not have to be enduring a problem like that unless she was putting undue pressure on her body like I do by weight lifting and jogging - but only after healing up for a couple of months.
  Come to think of it, after the first phase of my treatment - the shunt installation. I did go jogging a few days after my return home without any problem. It was the tumor resection a month later that really "cleaned my clock". That was a long recovery. The doctors warned me for that one: absolutely no strenuous physical activity for at least two months! I really couldn't have anyway, I was too weakened and needed the time to heal and stabilize.
  But I know that, in this regard, Kathleen had not been "overdoing it". She's too smart, too aware to have done something like that.
Kat is in a dangerous predicament. The exposure of c.s.f. can lead to the contraction of meningitis, which can be lethal.

                      Paul

5cm x 5cm left-side A.N. partially removed via Middle Fossa 9/21/2005 @ Mass General. 
Compounded by hydrocephalus. Shunt installed 8/10/2005.
Dr. Fred Barker - Neurosurgeon and Dr. Michael McKenna - Neurotologist.

nannettesea

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Re: Gennysmom.... oy... here we go again.
« Reply #9 on: July 28, 2006, 12:37:49 pm »
Thanks for the update, Pearly.  Glad it was a false alarm.  But she must monitor it closely, as we know she will--like Paul said, it's serious.

love,
Nan
1.7cm x 1.4cm x .8cm, right ear
Trans-lab approach
Dr. Jay Rubinstein, U of WA
8/29/05

Crazycat

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Re: Gennysmom.... oy... here we go again.
« Reply #10 on: July 28, 2006, 02:15:00 pm »
Oops, sorry about that. I only read the first statement. False alarm!? Thank God!!
     I'm just an angry person.

 Paul
5cm x 5cm left-side A.N. partially removed via Middle Fossa 9/21/2005 @ Mass General. 
Compounded by hydrocephalus. Shunt installed 8/10/2005.
Dr. Fred Barker - Neurosurgeon and Dr. Michael McKenna - Neurotologist.

Jim Scott

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Re: Gennysmom.... oy... here we go again.
« Reply #11 on: July 28, 2006, 02:27:07 pm »
I was pleased to read that the supposed CSF leak was a false alarm and the actual problem was not especially serious.

Having read about these CSF 'leaks' - here and elsewhere - I asked my neurosurgeon (pre-op, of course) if this might be a post-op problem for me.  He replied that he hadn't had an AN patient of his experience a CSF leak "in years".   I kept his record intact and did not have any CSF 'leaks', post-op,  thank God.   

I do not 'know' Kathleen but she is obviously a popular gal around here.   I'm happy for her avoidance of a CSF 'leak' -  and I certainly wish her well in her recovery.  :)


Jim

« Last Edit: July 30, 2006, 04:02:14 pm by Jim Scott »
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.

Obita

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Re: Gennysmom.... oy... here we go again.
« Reply #12 on: July 29, 2006, 05:54:55 pm »
Gennysmom:

Take it real easy this first month.  Hope you are feeling better every day.

Just wanted you to know I am thinking about you and hoping your recovery
is going much better than it started out.

Kathy from Minnesota
Kathy - Age 54
2.5 cm translab May '04
University of Minnesota - Minneapolis
Dr. Sam Levine - Dr. Stephen Haines

Gennysmom

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Re: Gennysmom.... oy... here we go again.
« Reply #13 on: July 29, 2006, 05:59:02 pm »
Thank you all for your thoughts, prayers, and e-mails to the hospital.....it really pulled me through.  My advice from this last trip.....do not stay alone in the hospital, you need an advocate 24/7.   Do not assume the nurses know what they are doing, and do not let them  bully you.  Mom and I were a bit infamous in telling a couple nurses to leave and never come back.  You need to be monitored every 1/2 hour if you are on a lumbar drip, and there were times my mom just did it to keep me safe.  I'm now an expert on lumbar drips, so let me know if you have any questions.  I apparently am an anomaly, my Dr.'s CSF leak incidence is 3%, which from what I've seen is lower than the national average.  

So, all is good for now, I can tell I'm getting some slight facial movement back and will soon be ready to get back on the PBW!!!!  I've still got the pink socks with the skull and crossbones on, and will wear them for at least the prerequisite 3 days.  Hopefully in another week or two I'm going to go have an outing with Nan.....something to look forward to!!!!!!  Finally!!!!!!!  

Anyway, thanks again so much for the e-mails everyone!!!!!!   Love you guys, you are great!!!!!!!!

Kathleen
3.1cm x 2.0cm x 2.1cm rt AN Translab 7/5/06
CSF leak 7/17/06 fixed by 8 day lumbar drain
Dr. Backous, Virgina Mason Seattle
12/26/07 started wearing TransEar

ppearl214

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Re: Gennysmom.... oy... here we go again.
« Reply #14 on: July 29, 2006, 06:08:01 pm »
I thought I was smelling stinky socks from the "bad" coast! :)

xoxooxoxox

*runs like heck!*
(left you vmail, btw!)
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"