Author Topic: Syl's 1 year Anniversary on June 16  (Read 2016 times)

Syl

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Syl's 1 year Anniversary on June 16
« on: June 06, 2009, 03:09:13 pm »
I can't believe it will be 1 year on June 16 since my retrosig surgery. I got my 1 year MRI done and it looks good. No new growth was detected.

My treatment for headaches with Pamelor seems to be helping alot. It's been weeks since I got one of those debilitating headaches. I still get neck or head pain, but it's much milder, and applying heat to my neck still seems to control it. I used to wake up with neck pain every day--not anymore. Every now and then I get an ear ache, which also makes my face on the AN side hurt.

As for my balance, I don't bump into doorways as often. I still find myself having to dodge them as I get closer to them, but I'm usually successful. A couple of weeks ago I thought I would wear something other than flat shoes. I got so dizzy that it took over a week to recover. I guess I'm not ready for those heels yet--they weren't even that high, but they were skinny heels. I'm ok with the chunkier heels.

I've been out in my garden more often. In fact, I was out there this morning doing things I hadn't felt like doing since my surgery. And the best part is that I don't feel so wonky-headed after dragging the hose around the yard and after pulling weeds.

That's another area where I have improved. The wonky-headedness has subsided a great deal. By the end of the day I'm tired and do get the wonky head, but those days are being outnumbered by normal days.

I had mentioned before that I would wait for the 1 year mark before accepting the new me. Well, I'm at that point and think I can live with the new me.

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 1 year Anniversary on June 16
« Reply #1 on: June 06, 2009, 04:06:35 pm »
Syl ~

I'm really pleased to learn that you're doing so well at your one-year surgery anniversary!  I think the last line in your post says it all:  "I had mentioned before that I would wait for the 1 year mark before accepting the new me. Well, I'm at that point and think I can live with the new me".  Congratulations on your progress - and may all your future MRIs remain 'clear'.  :)

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.

Tamara

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Re: Syl's 1 year Anniversary on June 16
« Reply #2 on: June 06, 2009, 04:10:48 pm »
Hi Syl,
  Congratulations on your upcoming anniversary!  I'm afraid I missed your actual surgery because I was in the hospital recovering from mine.  Aren't you glad the past year is behind you?  I too have made a lot of progress in the past year - still have a ways to go in some areas, but am probably 90% back.  I'm glad the gardening is going OK for you.  I have balance issues when bending over and then standing up, so I am trying to use my garden scooter a lot- it does seem to help.

Best wishes,
Tam
7 mm AN left side
translab 6-12-08
postop issues including CSF leak, eye issues, and facial palsy.  All issues resolved at 9 mos. except slight facial palsy & weakness.  Continuing to improve...

sgerrard

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Re: Syl's 1 year Anniversary on June 16
« Reply #3 on: June 06, 2009, 05:14:48 pm »
Syl, I was kind of wondering how you were doing, and hoping that no news was not bad news. Now here you are, and it sounds like things are looking up!

"As for my balance, I don't bump into doorways as often. I still find myself having to dodge them as I get closer to them, but I'm usually successful."

I think that "now I am usually successful" pretty much describes what adapting to the change in balance is all about. I experience the same thing, and it is now second nature to make the adjustment as I head into the turn. I haven't banged into a door jamb in quite a while.

The big thing is to have those headaches under control. Your success with Pamelor is very encouraging. I am so glad to hear that problem has diminished so much. Good news.

Best wishes for a great year #2.

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.

wendysig

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Re: Syl's 1 year Anniversary on June 16
« Reply #4 on: June 06, 2009, 06:00:06 pm »
Hi Syl,

Congratullations on your upcoming one year ANniversary!!  It sounds like all things considered you are doing really well!!!  I think some minor lingering balance issues may be something some of us just have to live with.  I'm very glad to hear that your headaches and neck pain have gotten so much better too.  As for accepting the new you, it's a good attitude, but I've heard some people continue to have improvements long (even years)  after their surgery, so maybe you will continue to see improvements too.  I'll keep my fingers crossed for you but congratulations on your great attitude!

Wendy

P.S.  Are you still loving Chatty Cathy?
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 1 year Anniversary on June 16
« Reply #5 on: June 06, 2009, 09:51:25 pm »
Thank you all for sharing my joy on my progress and my 1 year anniversary and my clean MRI. It's not hard keeping a positive attitude because I'm feeling really good. It's been years since I've felt this good, since I've had energy.

Wendy: I wear Chatty Cathy every day. I find that at work and indoors directionality is still an issue even with Chatty Cathy. But outdoors, is where I get the greatest benefit. I'm still loving it.

My next goal is to get off Pamelor, but it may be a while before that happens. I'll keep you updated.

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.

cherrypiper

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Re: Syl's 1 year Anniversary on June 16
« Reply #6 on: June 07, 2009, 09:15:07 pm »
way kewl there young lady !!!!!!!!!!!!  ::)

one year was a big deal for me..........good for you
10 mm x 2.4mm surgery date 12/03/07

glad to be here

Keri

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Re: Syl's 1 year Anniversary on June 16
« Reply #7 on: June 07, 2009, 10:00:48 pm »
who / what in the world is chatty cathy?
1.5 left side; hearing loss; translab scheduled for 1/29/09 at Univ of MD at Baltimore
My head feels weird!!

yardtick

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Re: Syl's 1 year Anniversary on June 16
« Reply #8 on: June 07, 2009, 10:18:47 pm »
Are some of us that old on this forum ??? 

Chatty Cathy was a doll that was "Chatty"  She was even available in the "Great White North".  I got her one year for Christmas from Santa.

Anne Marie

Sept 8/06 Translab
Post surgical headaches, hemifacial spasms and a scar neuroma. 
Our we having fun YET!!! 
Watch & Wait for more fun & games

wendysig

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Re: Syl's 1 year Anniversary on June 16
« Reply #9 on: June 07, 2009, 10:45:03 pm »
Keri,

Besides being a doll, Syl named her hearing aid Chatty Cathy -- I believe it was Steve's suggestion.

Sorry for the hijack Syl.

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!

Debbi

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Re: Syl's 1 year Anniversary on June 16
« Reply #10 on: June 08, 2009, 08:28:09 am »
Syl-

So great to hear from you - and especially great to hear you sounding so positive and upbeat!  I just passed my one year mark (Apr 30) and to celebrate, my hubby and I had a very nice dinner out (which beat the living heck out of the ice chips and morphine I had for dinner last year at that time!) 

It is great to be at the one year mark and to be able to really see the improvements.  I know that some things are forever changed, but it is so important to celebrate the victories and even to find some positives in the things that are different.  I was putting mulch in my garden the other day and was kneeling down and suddenly toppled right over.  I suppose I could have been irritated (and maybe on a different day, I would have been), but I just found myself laughing out loud.  My husband came running around the corner to find me laying on my back in the mulch laughing like a crazy woman - pretty soon we were both sitting there giggling.) 

I am glad that you seem to have gotten ahead of the headaches and hopefully you'll be able to be med-free eventually.  Sending you a big hug, Syl!

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

Pooter

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Re: Syl's 1 year Anniversary on June 16
« Reply #11 on: June 08, 2009, 05:55:26 pm »
Congrats on the 1 year milestone!  As I remember, there are a lot of us around this time of year.  :)

Regards,
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

Syl

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Re: Syl's 1 year Anniversary on June 16
« Reply #12 on: June 10, 2009, 10:10:26 pm »
Happy 1st anniversary and many hugs to those who had surgery around this time last year.

Keri:
It's just like Wendy said. Steve chose the name for my hearing aid. Why would anyone want to name a hearing aid?
I got it around Christmas time and everything on my Christmas wish list had to do with my AN and all it entails. The hearing aid was a gift to me from me, the Wii Fit was to improve my balance, the hat and scarf sets were to keep my head and neck warm because the cold gave me some bruttal instant headaches. So I figured if the AN and its side-effects were going to take over my life, then I was gonna enjoy it as much as possible. So I named my hearing aid Chatty Cathy just for fun. Quite appropriate, don't you think?

Debbie:
You are so right in saying that it's important to see the positive (or humorous) in what is forever changed. Just the other day at work, someone was calling my name from way across the noisy room, which has some 40 cubicles. Each time she reapeated my name her voice got louder. As I was doing a 360 looking around the room in search of the voice, I could see that there were several people looking at me. Then three of them swung up their arms in a very synchronized fashion and pointed toward the door as they called out to me and said "Sylvia, over there". All I could do was laugh and be grateful they rescued me. Too bad I can't take them everywhere with me.

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.