Author Topic: Waiting for Surgery - Supporting my wife  (Read 18114 times)

Keri

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Re: Waiting for Surgery - Supporting my wife
« Reply #30 on: June 15, 2009, 07:26:28 pm »
Hang in there! I hope you find out soon and get to see her for a little while.

Thanks for posting.

Keri
1.5 left side; hearing loss; translab scheduled for 1/29/09 at Univ of MD at Baltimore
My head feels weird!!

Kaybo

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Re: Waiting for Surgery - Supporting my wife
« Reply #31 on: June 16, 2009, 09:16:07 am »
Just texted Bryan to find out how things were.  He said that the surgery was 11 hours (they had told them 8 before the surgery) and that they were able to get most of it.  They left a "pea size or smaller piece" and will do GK on it later.  The Dr. thought that she was probably a "Grade 4 on the facial nerve but I (Bryan) think it might be a little better." I'm not sure about her pain level right now...I told him to give her Chapstick - that always helps everything!  Glad the surgery is over!

I let you know when I find out more!

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!

moe

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Re: Waiting for Surgery - Supporting my wife
« Reply #32 on: June 16, 2009, 09:56:03 am »
Thanks, K for the update,
And Bryan, glad to hear that Pam had a successful surgery. Further GK might be disappointing news, but she's alive and well!
Gentle hugs to Pam.
Take care of yourself, Bryan, OK?
She is in good hands.
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

Jim Scott

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Re: Waiting for Surgery - Supporting my wife
« Reply #33 on: June 16, 2009, 02:53:20 pm »
Brian ~

Thanks for transmitting the good news on Pam's surgery outcome....and thanks to our obliging Kaybo for sharing it with us. 

I underwent surgery (9 hours) and then, radiation to zap the remaining tumor.  It isn't so bad and usually very effective.  I trust Pam will do just fine and any facial paralysis will be temporary.

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.

leapyrtwins

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Re: Waiting for Surgery - Supporting my wife
« Reply #34 on: June 16, 2009, 07:35:40 pm »
Thanks for the update, Kaybo  ;D

Bryan -

if you get a chance to read this, please know that you and Pam are both in our thoughts and prayers.

The first couple of days are definitely the hardest; things generally improve from that point on.

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

bsharpintexas

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Re: Waiting for Surgery - Supporting my wife
« Reply #35 on: June 17, 2009, 02:03:23 pm »
Thanks again for the support guys. Big thanks to Kaybo for posting for me! Well it's been a little up and down the last two days. Yesterday the ENT/Surgeon evaluated Pam and said he thought she would be Grade 1 or 2 on her facial weakness within a few months. This was much better than we expected. I was very excited and told the family.  Then today the neuorsugeon came in and told Pam he didn't think Pam would make a full recovery. Maybe I jumped the gun? Unfortunately, I was not there during the visit since I was eating lunch with our kids.

Pam has been walking to the restroom without much help and also wanted to sit in the chair for awhile. They talked about taking off her head bandage tommorrow. As expected she gets tired very easily.

We are hanging in there. I would like to hear your comments when you have time. This forum and especially it's members has been a big help.

Hanging tough in Dallas,
Bryan

Jim Scott

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Re: Waiting for Surgery - Supporting my wife
« Reply #36 on: June 17, 2009, 02:25:31 pm »
Hi, Bryan ~

Thanks for posting during this somewhat stressful time.  You know its appreciated. 

I was pleased to learn about the positive evaluation on Pam from the otolaryngologist (ENT physician) but was a bit dismayed by the neurosurgeon's opinion that she wouldn't make a full recovery, which, I assume, pertains to regaining full facial mobility.  I would definitely ask him how and why he came to that conclusion.  Perhaps - and I sincerely hope this is not the case - the facial nerve was irreparably damaged by either the surgery or the AN.  Whatever his rationale, he has to have some basis for his negative evaluation.  Why did the ENT doctor have a different prognosis?  Naturally, you want to go with the more positive medical opinion but you have to be realistic and not raise false expectations for Pam.  The only way to do that is to have a serious talk with both doctors to try to find a consensus and, one hopes, a more positive prognosis for the eventual return of Pam's facial mobility.  It sometimes takes awhile, but others have experienced much success with regaining their facial mobility.  Sometimes, if the nerve isn't really damaged, any facial paralysis is quite temporary...anywhere from a few days to a few months.  We've seen all ranges of recovery from the folks who post here.

From this vantage point I can only offer hopes and, more importantly, prayers for your wife's full recovery.  She seems to be progressing quite normally, so far.  Let's hope that continues - on all fronts.  :)

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.

lori67

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Re: Waiting for Surgery - Supporting my wife
« Reply #37 on: June 17, 2009, 02:31:33 pm »
Hi Bryan.

Joining the discussion a little late, but I'm glad you got lots of good advice from everyone.  I'm glad your wife is doing well and getting around.  I know as soon as that head bandage comes off, she'll feel like a new woman!  And just wait for that first shower - heaven!!

Honestly, I don't think I'd pay a whole lot of attention to the neurosurgeon who says she may not make a full recovery.  No one really knows how things will go after this surgery, they just make an educated guess.  Keep hoping for the best and don't let what one person says get you down.  I'll bet Pam will surprise you at how well she does.  The fact that she has great support will help a lot.  

And a little comment about the ages of your kids - mine are 21, 18, 6 and 3.  And you wonder what YOU were thinking????   :D

Lori
Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

Kaybo

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Re: Waiting for Surgery - Supporting my wife
« Reply #38 on: June 17, 2009, 02:42:57 pm »
Bryan~
Thanks for the call last night - we got home late.  I was going to text you this morning - I will call in a little while!

Good that Pam is up and moving!!

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!

bsharpintexas

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Re: Waiting for Surgery - Supporting my wife
« Reply #39 on: June 17, 2009, 02:51:30 pm »
Well, I finally got the computer out instead of trying to type on my phone...  :P

Lori - Thanks for you comments (You guys are crazier than us!)  ;D Hope your big family is doing well!

Jim - We have noticed the neurosurgeion has always been a little more pessimistic than the ENT. He did say after surgery that the facial nerve was intact and had continuity. It is stretched out now but I believe I have read that it could contract back to it's normal length. We do consider the ENT more of the expert in AN's. Our ENT will be out of town for a week so we will probably have to wait to talk to him again. We will have an appointment with him about 14 days after we leave the hospital. I am sure that we will have a much better idea of the prognosis by then. I expect to talk to the neurosurgeon tomorrow to get more info.

Either way it sounds like we will need to wait a few months to see how things settle. She looks pretty good now and I would be happy with any improvement. I just want her to get rested, be able to move on with her life, and be happy.

More later,
Bryan

alicia

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Re: Waiting for Surgery - Supporting my wife
« Reply #40 on: June 17, 2009, 03:25:13 pm »
I can't believe she's up and moving around by herself already!  I had help for days and always hated when my husband made me sit in the chair!!!  Glad she has the energy and the attitude!!! 
02/16/18 III to IV post GK Facial Paralysis
12/13/17 Gamma Knife
05/19/09 Translab Larger than expected - Drs used the word "tangerine"   House - Friedman and Schwartz
04/02/09 Diagnosed Left AN 3.2cm x 2.6cm x 2.7cm

CHD63

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Re: Waiting for Surgery - Supporting my wife
« Reply #41 on: June 17, 2009, 04:48:06 pm »
Bryan .....

Good to get the latest on Pam.  As for her recovery, remember our bodies are amazing and wonderfully designed machines so keep a positive outlook.  Walking to the bathroom without much help at this stage is great!  I used a walker for 5 days!!!

Our thoughts and prayers continue for complete recovery.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

bsharpintexas

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Re: Waiting for Surgery - Supporting my wife
« Reply #42 on: June 17, 2009, 10:14:02 pm »
Well we hit a speed bump on this roller coaster. Pam's nurse noticed some leakage from her nose after Pam was walking around and when she was sitting up. She suspected a CSF leak and she was right. Good catch by her!

Between 9:30 and 10:00 tonight one of the doctors ,inserted a lumbar drain. Very painful for Pam. Much worse than an epidural (I know. I was there for all three). Pam was a trooper. She doesn't complain much but I know she was in a lot of pain. It's in now and she is resting comfortably. They will drain 20 cc's every 4 hours. She has to lay flat for about 1/2 hour afterwards. As most of you know this releases some of the pressure from the CSF in the skull and allows the wounds from the surgery to heal and seal. (I'm and expert now, yeah).  :-\

This will delay her release from the hospital by about 3 days. Hopefully the lumbar drain will take care of the problem and we don't have any other complications.

Overall I am very happy with her progress. Keep your cyberfingers crossed.

Thanks,
Bryan

sgerrard

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Re: Waiting for Surgery - Supporting my wife
« Reply #43 on: June 17, 2009, 10:47:10 pm »
Sounds good to me. The neurosurgeon has said it won't be a perfect recovery; well grade 1 or 2 will do just fine. Those are in the "only you notice it" category.

Bummer on the CSF leak, they just seem to happen sometimes. Pam is neither the first nor the last AN patient to get one of those. It will fix up in a few days.

Get some rest yourself, Bryan. Pam is going to be okay.

Steve
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.

Kaybo

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Re: Waiting for Surgery - Supporting my wife
« Reply #44 on: June 18, 2009, 07:20:01 am »
OH NO...I guess the Dr. confirmed this when he came by after we spoke??  Sorry it was so painful for Pam (& you to watch, I'm sure)...hope she is comfortable now.  Even though this is a bump, good thing it was caught so early and can be address now - as Steve said, many have had this & come out on the other side OK.  Glad your MIL is able to stay for so long so that you don't have to worry about the kids too!

Be in touch!

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!