Author Topic: Syl's surgery update  (Read 29619 times)

Debbi

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Re: Syl's surgery update
« Reply #60 on: July 14, 2008, 03:25:02 pm »
Syl-

So glad you found somethign that worked at BB & B.  And, I am THRILLED that you can whistle!!  Yahoo!  I still can't do that, so am feeling quite in awe.  It sounds like you are doing very well - just remember to be patient!

Debbi, still not whistling in NJ...
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

Syl

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Re: Syl's surgery update
« Reply #61 on: July 14, 2008, 11:09:37 pm »
Hey Syl,

...How is your equilibrium?  Know you're headed to PT tomorrow, but just wondering how it seems now.... 

Cindy

Went for a walk around the entire block tonight--maybe 15 minutes or so. We were going very slow, my walking buddy on one arm and my cane on the side. It's very difficult to turn my head to the sides and walk forward. Each time I did that I had to stop due to the dizziness and loss of balance. Still can't stand on one foot with eyes closed without immediately tipping to the side. I have a ways to go. Thanks for asking, Cindy.

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.

Debbi

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Re: Syl's surgery update
« Reply #62 on: July 15, 2008, 06:12:03 am »
Syl - it sounds to me like you are doing very well - good for you for getting out and walking!  It it is any consolation, I still can't really stand on my An foot (think Yoga Tree Pose) for more than about a second or two without tipping.  And, if I close my eyes - forget it!  I tried no-eyes on the Bosu ball the other day and fortunately, my husband was there to catch me!   :D

I think you're doing great, Syl - just be patient!

Debbi
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

wendysig

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Re: Syl's surgery update
« Reply #63 on: July 17, 2008, 05:27:29 pm »
Syl,
Glad to hear you are progressing well in your recovery.  It sounds like except for your balance issues (which I am not discounting I can't stand on one foot for very long now, so I know how that feels) you are on the fast road to recovery!  Great news!

Wendy
1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!

Syl

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Re: Syl's surgery update
« Reply #64 on: July 19, 2008, 11:09:01 pm »
Hi, all,

Prednisone side effects: among others are headache and dizziness. I got 2 more days to go with the steroids. Hope to see a reduction in headache and dizziness real soon.

I have a real good grasp of what "good days" and "bad days" means. I'm noticing more and more of the good ones with great improvement in my condition. One day I can do lots of stuff and feel ok, then for 2 days I feel so tired and only want to stay put.
Today was a very good day. I went for a walk by myself, then went out and about town, then went for a walk again. It's great being able to get out--now if I could only drive myself there.

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.

Debbi

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Re: Syl's surgery update
« Reply #65 on: July 21, 2008, 08:27:00 am »
Patience, Syl, Patience.  You'll be driving before you know it.  For now, celebrate the walks and other milestones - you deserve it!  I know what you mean about having good days and bad ones.  Most of mine are good now, but if I do a lot one day, I'll pay for it the next day.  I expect it though, so it isn't so much of a problem.

You're doing great!

Debbi
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

leapyrtwins

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Re: Syl's surgery update
« Reply #66 on: July 21, 2008, 06:27:44 pm »
Syl -

just wanted to echo what Debbi said.  You are doing great and will be driving before you know it. 

One day at a time,

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

Pooter

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Re: Syl's surgery update
« Reply #67 on: July 21, 2008, 10:17:18 pm »
Syl, I agree with everyone else.  I couldn't wait to drive again.  If memory serves, your only a few weeks out.  I didn't drive at all for almost 6 weeks or so after my surgery.  It's only been recently that driving seems more "normal" for me and I am 2.5 months after my surgery.  Patience is definitely in order for each of us.  It will come with some time for ya.  Don't rush it too much.  There's a fine line between pushing too hard and not enough.  Pushing too hard could hurt.  Patience, patience, patience.  You are doing better than anyone could expect.  Take it easy while you can get away with it. ;)

Congrats on doing so well!

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

wendysig

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Re: Syl's surgery update
« Reply #68 on: July 21, 2008, 11:24:02 pm »
Hi Syl,
From what I understand having good and bad days is the norm.  It sounds like you're doing really well.  I know you've heard it before but patience is key when recovering from any surgery, apparently even moreso with this one.  One step at a time.

Wendy
1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!

cmp

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Re: Syl's surgery update
« Reply #69 on: July 23, 2008, 07:35:08 pm »
Syl--

So glad to hear about your wonderful facial reanimation milestone--you whistled AND have your dimple back! Whoo hoo!

Hope you're feeling much better now that you're done with the prednisone, and that the "good days" keep increasing in frequency for you...

Carrie

5 cm AN surgery, Shands Hospital, FL, Dr Albert Rhoton, 1988; VII-XII anastamosis for right-sided facial palsy 1989; diagnosed Feb 2008 w/ 1.8 cm recurrence; drs McKenna & Martuza; surgery rescheduled for 6/24/08!

Syl

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Re: Syl's surgery update
« Reply #70 on: July 25, 2008, 12:22:10 pm »
Hello fellow forumites,

I've been off prednisone this week. I'm now getting more headaches and they stick around longer--not what I was hoping. The dizzines has been pretty bad. More bad days than good this week. I have been walking about a mile 2 times per day. Could I be overdoing it?

Syl
« Last Edit: July 25, 2008, 12:24:01 pm by 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.

Jim Scott

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Re: Syl's surgery update
« Reply #71 on: July 25, 2008, 12:31:54 pm »
Hi, Syl:

I'm sorry to learn of your bad days becoming more frequent but you may have something with relating them to walking.  Even though a mile twice per day isn't a lot for some, it could be too much for you.  If so, your body has less resources to facilitate healing and that could result in the bad days.  Just speculation of course, I could be completely wrong.  Rest more and see if that helps, as I pray that it will.

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: Syl's surgery update
« Reply #72 on: July 25, 2008, 05:57:19 pm »
Syl -

I like Jim's suggestion.  Try to rest more and see if makes a difference.

Although you may not feel like you are overdoing it, your body may have a different opinion.

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

Syl

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Re: Syl's surgery update
« Reply #73 on: July 25, 2008, 08:28:58 pm »
Thanks Jim and Jan.

I'll shorten my walks and see how that goes.

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.

Debbi

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Re: Syl's surgery update
« Reply #74 on: July 26, 2008, 07:51:03 am »
And, if the headaches continue, call your doctor, okay?

I hope you have a better weekend, Syl - you deserve it!

Debbi
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com