Author Topic: Update on my husband  (Read 3048 times)

mandy721

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Update on my husband
« on: August 16, 2009, 01:25:53 pm »
The past 13 days have been really tough.  Ken's surgery was.....more complicated than expected ( never a surprise in my family).  My daughter and I gave Ken a big hug at about 7:30am the morning of the 4th.  At 1pm, the report was that surgery was going smoothly.  I had headed home for some rest at about 9 and then headed back to the med center at 1.  At 4 the neurotologist came out to report that the first part of the surgery went extremely well, but as they continued they found the tumor capsule was enmeshed with the facial nerve and the going got very difficult.  I think he came out at about 5 or so, and I was able to see him in ICU at about 6:30 that evening.  The facial nerve remained intact and showed some activity during surgery, the balance nerve is gone and he came out with the same hearing measurement as he went in with.  

He was transferred to rehab this past Wednesday evening and is getting stronger and steadier.  His balance is off, he has significant right side facial weakness and numbness, weakness in his right hand  and the hearing in the right ear comes and goes.  A bit of ringing and no headaches to speak of.  Tomorrow, he is scheduled for the gold eyelid weight.  Things are slowly, very slowly getting better.  Neither of us were really prepared for the complications.  Intellectually we knew the range, but the focus is always on the good or average result.    



When I get my wits about me, I will post more.  We have the scarf.  
Husband diagnosed 5/30/09 with 3.2cm right AN
Surgery at  Columbia Presbyterian 8/4/09
Platinum eye weight implant - 8/17/09
17 days in hospital and rehab
SSD, facial weakness, some tinnitus, headaches , balance and eye problems

Jim Scott

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Re: Update on my husband
« Reply #1 on: August 16, 2009, 01:32:46 pm »
Hi, Mandy ~

Thanks for the update.  I'm sorry to learn about your husband's surgery complications.  I agree that although one may have an intellectual understanding of possible post-op complications, when and if they actually happen, the reality is always a bit upsetting.  I hope (and will pray) that your husband's condition continues to improve as his recovery progresses.  I'm sure your support is helping him.

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.

Syl

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Re: Update on my husband
« Reply #2 on: August 16, 2009, 03:13:41 pm »
Mandy:

If the facial nerve responded during surgery, I hope and pray it means that it'll recover in time. The same goes for his hearing. If it's coming and going, then hopefully as the nerve heals, your husband will recover his hearing. As for the balance nerve, mine was also removed and I'm doing ok with my balance. I hope the headache demon stays away.

The worst is over. Not knowing what the outcome will be sure is hard. I remember just wanting to get the surgery over and done with, whatever the outcome, so that I could deal with the issues and move on. It's a long road ahead, but from hear on it only gets better.

Syl
1.5cm AN rt side; Retrosig June 16, 2008; preserved facial and hearing nerves;
FINALLY FREE OF CHRONIC HEADACHES 4.5 years post-op!!!!!!!
Drs. Kato, Blumenfeld, and Cheung.

nancyann

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Re: Update on my husband
« Reply #3 on: August 16, 2009, 03:52:03 pm »
Hi Mandy:  I am also sorry to hear about the complications.  I am glad his nerve is intact & there was nerve activity during surgery.
(I had no nerve activity during surgery & they had cut the facial nerve & re-attached the ends.  I never regained facial movement).
As you probably know,  there are those on the forum who are still seeing improvement a few years post op (facial nerve intact).
I'm glad they're putting in a gold weight sooner than later,  I waited 1 month & wish I had it done sooner - that will help protect his cornea.
Many of us use Refresh PM lubricant (sensitive type) - it's in a tube.  You may want to pick some up at the drugstore - for me, especially with the
paralysis, it works the best.
As Jim said,  your support/ just being there, will help in your husband's recovery.
This may take some time,  remind him of that.
Will keep you both in my thoughts & prayers.   You both try to keep a peaceful heart.
Always good thoughts,  Nancy
2.2cm length x 1.7cm width x 1.3cm  depth
retrosigmoid 6/19/06
Gold weight 7/19/06, removed 3/07
lateral tarsel strip X3
T3 procedure 11/20/07
1.6 Gm platinum weight 7/10/08
lateral canthal sling 11/14/08
Jones tube insert right inner eye 2/27/09
2.4 Gm. Platinum chain 2017
right facial paralysis

Darin

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Re: Update on my husband
« Reply #4 on: August 16, 2009, 05:33:43 pm »
I hope that everything heals well, I'm sure it will. The side effects/possible issues of surgery are so many, the upside is that they (usually) improve with time. Hang in there! -Darin
3cm AN on right side
Surgery July 1st, 2009
C'mon facial nerve, you can do it!

Rich56

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Re: Update on my husband
« Reply #5 on: August 16, 2009, 10:52:19 pm »
Hi Mandy,

I was afraid there may have been complications, since you had not updated.  As others and I'm sure the Dr. has said, that having nerve response during the surgery is very reassuring.  We'll be praying that his facial paralysis diminishes quickly.

That is great news that he retained his hearing, you mentioned how much that worried him.  Hopefully as the swelling subsides, the hearing will stabilize.

With your help, Ken will be okay.  Please try to keep your spirits up, and make sure you get rest.

Update when you have the energy, we're all here for you.

You will both be in our thoughts,

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

Keri

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Re: Update on my husband
« Reply #6 on: August 17, 2009, 07:14:20 am »
Hi Mandy,
It's good to hear from you and about Ken. I'm too sorry that things were more complicated than expected. I didn't expect to have any facial nerve damage and was quite surprised by that too. I hope he keeps improving over time.
Keep us posted as you're able to do so. Tell Ken he's in our thoughts and prayers.
Keri
1.5 left side; hearing loss; translab scheduled for 1/29/09 at Univ of MD at Baltimore
My head feels weird!!

suboo73

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Re: Update on my husband
« Reply #7 on: August 18, 2009, 04:35:56 am »
Hi Mandy,

Thank you for the update on Ken. 
Will continue sending many thoughts and prayers for healing.

As others suggested, don't forget to rest too.

Sincerely,
Sue
suboo73
Little sister to Bigsister!
9mm X 6mm X 5mm
Misdiagnosed 12+ years?
Diagnosed Sept. 2008/MRI 4/09/MRI 12/09/MRI 1/21/11
Continued W & W

alicia

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Re: Update on my husband
« Reply #8 on: August 24, 2009, 08:23:35 pm »
Hi there Mandy!  I am glad to hear from you!  I have been off the board for a bit getting kids back to school...Sorry to hear about complications.  Please call if you'd like to chat again.  Hang in there - day by day  :)
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