Author Topic: 1 Year Today  (Read 2979 times)

cheza

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1 Year Today
« on: November 09, 2008, 02:02:59 pm »

Hey guys,

Well its been a while since I last dropped in for a chat, but I just wanted to share with all of you my 1st anniversary, I can't believe its been a year since the op and has it changed me?

well in some ways yes it has, I don't look exactaly the same as did pre op my smile is still slanted and my eye still won't blink I have a scar behind my left ear and an antena sticking out of the side of my head (BAHA) but I think I'm still the same person underneath! my confidence took a bit of a knock but its coming back slowly. my family have to put up with me being a total scatter brain, i forget everything apart from the day and I'm sure I only remember that because I have to look at the calander everyday to find out what I'm supposed to be doing.

Over the last few weeks I've been feeling a little strange, i can't discribe it really, I guess iI was just reflecting on the last 12 months and thinking after everything I've been through here i am still just plodding along, doing the same job, sitting in front of the tv at night, moaning at the kids to do there homework and clean their rooms, concidering I went through something thats life changing my life hasn't changed at all.

After a week or so of feeling slightly sorry for myself and wondering what I could do that would forfill the void in my life (because I have a second chance at life I may  aswell do something amazing with it), I realised something.....my life has changed because even though I moan at the kids, still sit in front of the tv each night and still do the same job, I also, spend time with my family, watch my children grow, spend time just talking about random things with my friends, lay in bed in the arms of my husband on lazy sunday mornings, speak with my neighbours about the dog that keeps doing its business on the front lawn, see the sun rise and set, the seasons change, watch my progress and thank god I'm still alive, the most life changing thing that could happen to anyone is .....learning to appreciate the life you have and for me knowing that if it wasn't for some very clever doctors, theres a good chance that I might not have been here for any of it even the mundane things.

You see i realised i am doing something amazing with my second chance, I'm Living!!!!  

Take care all of you, enjoy every minute and cherrish every second.  :-* Cheza
diagnosed 4th Oct 07 with a 3cm left acoustic neuroma,
surgery 9th Nov 07, age 30 at time of surgery,
total hearing loss to left ear, grade 6 facial palsay (getting better)
latest MRI shows regrowth on facial nerve.

mimoore

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Re: 1 Year Today
« Reply #1 on: November 09, 2008, 02:26:35 pm »
Hi Cheza,
Thanks for the update. It is great to hear such a success story. I have to agree that I am happy to be here and do the mundane things as well. I look at life a little different now, I think before I was preparing for a dress rehersal and today I LIVE my life. Yep laundry is part of it but now I don't get freaked out over stupid little things because it is a total waste of energy. I watch my colleagues stress over things and my new saying is I am a duck, I let things roll off my back. I am by no means a push over I know how to stand up for myself and I am happy to have a second chance as well.
Can you let us know how your facial issues are now? Everyone is different and really in the end it depends on how much damage ones facial nerve sustained but it certainly is great to hear how others have progressed.
Thanks for coming back and letting us know. I will remember how eager I was to read the story of others. Even though life goes on I will never forget the great people I have met here. I will come back and update, maybe I might make someone feel good too!
Michelle  ;D
Retrosigmond surgery on June 4th, 2008 for an AN. 100% hearing loss and facial paralysis (was not prepared for facial paralysis). Size: 2.3 cm, 2.1 cm, 1.8 cm. some tumour remains along facial nerve. Pray for no regrowth. Misdiagnosed for 10 yrs.

sgerrard

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Re: 1 Year Today
« Reply #2 on: November 09, 2008, 02:30:48 pm »
Hi Cheza,

Nice to hear from you, and that is a lovely philosophy you have now adopted. Like Michelle, I also live my life now, although I still don't consider doing laundry to be a part of it.  :D

I am also curious if you have a BAHA and how is that working, and how is your facial nerve coming along.

You really are doing something amazing; keep it up. :)

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.

cherrypiper

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Re: 1 Year Today
« Reply #3 on: November 09, 2008, 06:21:25 pm »
CONGRATS on  one year..............mine is coming up dec 3rd. glad to see you here too!!!!!!!!! ;D
10 mm x 2.4mm surgery date 12/03/07

glad to be here

wendysig

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Re: 1 Year Today
« Reply #4 on: November 09, 2008, 07:15:59 pm »
Cheza
Great to hear from you nad thank you for the update.  Yes, returning to the mundane is probably something most of us aspire to and it is amazing that you have slipped back into your "normal" life without even noticing it until now.  That is definitely a good sign! ;D

Best wishes,
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!

Omaschwannoma

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Re: 1 Year Today
« Reply #5 on: November 10, 2008, 05:34:57 am »
Cheza,

Welcome back and thanks for your GREAT outlook on your life--well stated.  Some people (me included) think with a second chance you must do something other than or bigger than what you have already done and you have made it clear (thank you) what you do IS important especially to those around you. 

BTW the memory thing will come back for you, as I remember my first year out I still had much difficutly with this.  Today I am over three years past and it's so much better.  I am presently taking ASL (American Sign Language) and talk about a challenge!  Eye, hand and brain coordination is multi-tasking at it's finest, I love my classes. 
1/05 Retrosigmoid 1.5cm AN left ear, SSD
2/08 Labyrinthectomy left ear 
Dr. Patrick Antonelli Shands at University of Florida, Gainesville, FL
12/09 diagnosis of semicircular canal dehiscence right ear

Raven

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Re: 1 Year Today
« Reply #6 on: November 10, 2008, 06:40:42 am »
Hey Cheza,

Good to see you are doing well, I remember me and you had our surgeries the same time last year. I posted my little 1 year report in the post treatment catagory..........check it out if you haven't already.

John
7/10/07 hearing gone in left ear overnight
7/25/07 diagnosed with bilateral acoustic neuromas - aka NF2
11/7/07 left side tumor removal via middle fossa - 12 hrs.
11/15/07 right side decompression via middle fossa - 8 hrs.
Dr. Eisenman - University of Maryland Medical Center

cheza

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Re: 1 Year Today
« Reply #7 on: November 10, 2008, 08:54:46 am »
Hey all,

thank you for all your kind words,

in answer to some of your questions, yes i now have my BAHA, I've only had it  a week and it seems to be making a difference, i don't seem to notice how well it works until I take it off which I guess is a good thing, I think it will just take time to get used too!

with regards to my face movement I think I'm doing really well, in fact just a few weeks ago my doctors said i was now at a grade 4 which I think is great in 12 months!(I started off at grade 6 which is the  worst) not sure if the grading is the same in the US.

So all in all I think I'm doing really well, my life is almost normal, apart from the eye lube, having to put my BAHA on and my face being a little off centre, lifes good.

I hope all of you are doing just as well, I think I've been very lucky!!!  ;D
diagnosed 4th Oct 07 with a 3cm left acoustic neuroma,
surgery 9th Nov 07, age 30 at time of surgery,
total hearing loss to left ear, grade 6 facial palsay (getting better)
latest MRI shows regrowth on facial nerve.

Syl

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Re: 1 Year Today
« Reply #8 on: November 10, 2008, 02:43:51 pm »
Hi Cheza,

I like reading anniversary updates because it gives me something to look forward to for myself. I'm almost at the 5 month mark, and still have some issues that I hope will resolve by the time I hit my 1 yr anniversary.

Life is different now for me, but that doesn't mean it changed for the worst. It's just different.

I made some new best friends--Tylenol and my heating pad. They greet me in the morning and tuck me in at night.

My diet has certainly changed. I have Tylenol for breakfast, lunch and dinner. Sometimes even for a late nite snack.

I'm too young to have senior moments and my hair is not blonde, so I call my lapses in brain activity acoustic neuroma moments.

I'm hoping that when I hit that 1-yr mark, my diet and new best friends will not have such a big role in my life. But if they so happen to stay, I'll just have to deal with it, because life goes on. I try not to forget to count my blessings.

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: 1 Year Today
« Reply #9 on: November 10, 2008, 04:20:49 pm »
Cheza:

Please accept my appreciation for dropping back to this site and forum to offer an update and very compelling commentary on the value of living what some might call an 'ordinary' life, following an 'AN experience'. 

I recall that as I lay in my hospital bed a few days after my surgery, looking out the window, I could see some workmen doing something on the roof of an adjacent part of the hospital.  I actually longed to be one of them, doing mundane but necessary work out in the early summer sun.  Fortunately, before long, I was out of the hospital and able to re-engage in my ordinary pursuits.  Recently, my wife and I remodeled our bedroom - and it was a lot of work.  However, the fact that I was able to do it, including some (short) ladder climbing and moving furniture, was encouraging.  I realize, as you have, that, in fact, I had my life back.  I take pleasure in that achievement and I know many others feel the same way about their own 'comebacks'.  Thanks again for reminding us that our so-called 'ordinary' lives have value far beyond what others may see and that occasionally it takes something as small as an acoustic neuroma and the complications it can bring into our lives, to help us see it, too.  :)

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.

cheza

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Re: 1 Year Today
« Reply #10 on: November 11, 2008, 08:53:38 am »
Hey john,

I read your post 1 year post op, you should be really proud of yourself, especially after going through 2 ops and getting yourself out of the depression with out the aid of "happy pills" as you call them, I don't tend to get down or feel depressed, I do have days where I feel sorry for myself but it doesn't usually last for long, I mainly put it down to 1 hormones and 2 being female.

I do remember swapping posts with you last year before we went into hospital, it seems so long ago that I was walking into the hospital but all the feelings are still as fresh as if it was yesterday, I don't belive we will ever forget those, they're as promenant as the scar behind our ear.

Take care John its good to hear that your doing well too, feels like we have a connection with our surgery's having been so close. 
diagnosed 4th Oct 07 with a 3cm left acoustic neuroma,
surgery 9th Nov 07, age 30 at time of surgery,
total hearing loss to left ear, grade 6 facial palsay (getting better)
latest MRI shows regrowth on facial nerve.