Author Topic: Newly diagnosed – frightened, depressed and anxious  (Read 17524 times)

edhayes

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Re: Newly diagnosed – frightened, depressed and anxious
« Reply #30 on: February 16, 2008, 09:50:27 pm »
I have spoken to many people that said the surgery was a cake walk.
I am just very frightened of it.
It's a personal thing I guess.
Can I ask how long it took before you were back on your feet and doing your normal day to day activities?
Did you have any complications, ie hearing, face , anything?

lori67

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Re: Newly diagnosed – frightened, depressed and anxious
« Reply #31 on: February 16, 2008, 10:25:42 pm »
Hi Ed.

I wouldn't exactly call it a cake walk - depending on what kind of cake you're used to, I guess!  It is major surgery - but I can tell you, it wasn't nearly as bad as I had imagined brain surgery to be!  I didn't have any pain afterwards and am able to deal with the other inconveniences pretty well.

I have right side deafness and some slowly resolving facial paralysis.  I've had surgery to minimize the damage to my eye that won't close and to make it more comfortable and surgery to put in a BAHA implant.  These things have made my day to day life a little different, but after a year (next Wednesday) of dealing with them, I kinda just have become used to it now.  I realize there are people out there suffering a lot more than I am, so I just do what I need to do.

As far as returning to regular activities, everyone is different, so it's hard to say.  I basically took 2 weeks "off" - I'm a stay at home Mom, so it's not like I get days off - but after 2 weeks when my husband went back to work and all our help left, I was able to care for my little ones (ages 4 and 9 months at the time), do laundry, cook, clean...the usual routine.  About the only thing I wasn't doing at that point was driving - I waited until about 8 weeks after surgery to do that.

It's normal to feel frightened.  I get that way when I go to the dentist for a cleaning, so heck - you can imagine how I felt before my surgery!  I think you'd have to be crazy to not be a little on edge over surgery - of any kind.  Just know that we've all been there and we made it through!

Good luck and hopefully you've gotten lots of good input here.  I know I have!
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.

sgerrard

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Re: Newly diagnosed – frightened, depressed and anxious
« Reply #32 on: February 17, 2008, 12:10:00 am »
"Abducted by Aliens - They Probed My Brain!" reads the headline. "My choice was breath some gas while they cut something out of my head, or have my head clamped to a table while they zapped me with a giant machine!"

It is weird to be confronted with this situation, and reasonable to be frightened of it. Your best consolation is that many have gone before you, and in most cases it works out well enough in the end. CK or GK is probably easier to do than surgery, but either way there is a journey to go through after treatment. As Lori said, you just get used to the "new normal" in your life, whatever that winds up being.

Take it easy for a bit, you don't have to wrap this up right away. If you let your mind mull it over, you will work out what you are going to do and get comfortable with the idea.

Best wishes, 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.

ppearl214

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Re: Newly diagnosed – frightened, depressed and anxious
« Reply #33 on: February 17, 2008, 07:05:11 am »
I have spoken to many people that said the surgery was a cake walk.


Ed, I'd personally like to know who said that....... *raises single eyebrow*

Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Joef

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Re: Newly diagnosed – frightened, depressed and anxious
« Reply #34 on: February 17, 2008, 07:45:17 am »
thats it ... Aliens caused the AN ... LOL ....

of course everyone is a little differnent when it comes to surgery .. but as a guideline .. the bigger the AN .... (and the longer the surgery)  the more chance for issues... and this could be said for ANY surgery !! ... just by going under.. if they kept you every for a few hours and did nothing else... you body would still take a few weeks to get back to normal ...
4 cm AN/w BAHA Surgery @House Ear Clinic 08/09/05
Dr. Brackmann, Dr. Hitselberger, Dr. Stefan and Dr. Joni Doherty
1.7 Gram Gold Eye weight surgery on 6/8/07 Milford,CT Hospital

nancyann

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Re: Newly diagnosed – frightened, depressed and anxious
« Reply #35 on: February 17, 2008, 07:52:59 am »
I personally wouldn't call the surgery a 'piece of cake' - my cholecystectomy was a piece of cake, my bilateral ulna nerve decompression & transposition
was a piece of cake, gold weight implant into upper eyelid, & then removal was a piece of cake;    this AN surgery was a nightmare!!!!   (Glad I'm doing so much better now, only since the TTT surgery! - not a piece of cake either)...
« Last Edit: February 17, 2008, 12:13:51 pm by nancyann »
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
right facial paralysis
good to go.

leapyrtwins

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Re: Newly diagnosed – frightened, depressed and anxious
« Reply #36 on: February 17, 2008, 12:23:06 pm »
Ed -

calling the surgery a cake walk is a little too optimistic in my opinion.  Despite my lack of lingering side-effects, SSD being the only one I'm left with (thank God), I would never describe the surgery as a cake walk.  Don't let yourself be frightened, but don't kid yourself either; you need to realize it IS major surgery.  Is it the end of the world?  Definitely no.  Am I sorry I did it?  Again, definitely no.  It was the right choice for me.  And today a lot what I went through is at the back of my mind - not the front; a lot of the unpleasant memories have faded.

But that said, I woke up post op feeling like I had been run over by a very large truck - the room was spinning; I had double vision for 3 or 4 days; severe nausea for 5 days; balance issues for weeks; no taste buds, metallic mouth, dry mouth, and dry eye for months.  It also took me months to get past the fatigued feeling. 

But the good news, I got through it and every day I got better and better.  I was back to work part-time in 2 1/2 weeks and back to full time in 4 weeks.  I'm not trying to scare you, or anyone else, but don't take surgery lightly - it will be tough at times.  But, you WILL get through it.

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

LADavid

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Re: Newly diagnosed – frightened, depressed and anxious
« Reply #37 on: February 17, 2008, 01:00:19 pm »
So I'm the "piece of cake" guilty party.  Compared to what I conjured it up to be, it was.  But I would like to point out that my surgery only lasted 4 hours -- I had a relatively small tumor -- and there were no serious complications.  There was no pain with the actual surgery -- headaches later.  And I'm putting it in comparison to two other very painful abdominal surgeries I had.
Ed -- as far as the after-affects -- my surgery was 12/3/07 -- I still have facial palsy because the facial muscle nerve was stretched and some balance issues.  I see improvement in the balance -- I just went for a walk/run -- my head still feels mushy but as long as I keep my feet close to the sidewalk, I don't lose my balance.  My biggest issue is my eye.  I can go without a full smile, I can deal with eating, I put up with a loss of taste, but the eye care is difficult.  You might want to read the posts under post-operative -- eye issues.  It's now been over two months for me and I haven't been able to return to work -- but I'm an actor and I need my smile back before I can work. 
Right ear tinnitus w/80% hearing loss 1985.
Left ear 40% hearing loss 8/07.
1.5 CM Translab Rt ear.
Sort of quiet around here.
http://my.calendars.net/AN_Treatments

nancyann

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Re: Newly diagnosed – frightened, depressed and anxious
« Reply #38 on: February 17, 2008, 01:12:17 pm »
David - I was just the opposite - I didn't think much about the surgery, didn't plan anything, etc, & for me it was the WORST.
   Guess everyone's got a different perspective.
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
right facial paralysis
good to go.

Kaybo

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Re: Newly diagnosed – frightened, depressed and anxious
« Reply #39 on: February 17, 2008, 02:07:31 pm »
David~
Since yours was a piece of cake -- I get the corner with LOTS of icing!!!!!!!

Mine was NOT, but it probably had something to do with being on the operating table for 14 hours and having a stroke while there!!  :o)  I was like Nancy, I really did plan for anything, but I really didn't have time.  Plus, as I have said many times before...I was young, naive & BLOND...what can I say?
All that said, it doesn't matter how bad it is at the time...you CAN and WILL recover -- I have an incredible life now!!!  Is it a bit different than others?...do I look dfferent?  YEAH, but still wonderful!!
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!

ppearl214

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Re: Newly diagnosed – frightened, depressed and anxious
« Reply #40 on: February 17, 2008, 05:16:06 pm »
David, you didn't have to publically note that... but appreciate what you have shared about it..... so thank you. :)   Not a witch hunt, so don't take it the wrong way, ok?  :)  I'm glad that your procedure was short in the OR and we know HEI does great work.... even with what you endure now, I have a feeling that the smile certainly comes from within and my hope is that it branches back outwards :) Hang tough!

Agree with all that AN surgeries can come with complications... some outcomes are good, some not so good... and "individual results may vary".  I commend Ed for researching all that he is and continues to do to find what will work best for him.  He's heard some about radio-treatments and learning about the microsurgical, thanks to you all that are courageous enough to share.... and continue to send wishes for wellness... to you all.

Phyl

(btw, I like the icing as well!) :)
« Last Edit: February 17, 2008, 05:20:35 pm by ppearl214 »
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

lori67

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Re: Newly diagnosed – frightened, depressed and anxious
« Reply #41 on: February 17, 2008, 11:04:13 pm »
Ah, David, you're probably just used to playing a tough guy!   :D

And if there's cake - I want some too!  Before anyone walks through it!   ;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.

LADavid

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Re: Newly diagnosed – frightened, depressed and anxious
« Reply #42 on: February 17, 2008, 11:29:23 pm »
Hey Lori
Me play tough guy????  LOL!  I ususally play compassionate ministers or doctors.  Maybe I need to rethink my post-recovery.
And Phyl -- my pre-idea of the surgery was some Frankenstein thing -- lightening, thunder,  Igor, bolts on the head.  My imagination tends to get carried away.  As far as I could tell, it wasn't like that -- at least not while I was awake.  No telling what went on when I was under.  Hmmm, come to think of it, I do have this unusual fear of fire.
David
Right ear tinnitus w/80% hearing loss 1985.
Left ear 40% hearing loss 8/07.
1.5 CM Translab Rt ear.
Sort of quiet around here.
http://my.calendars.net/AN_Treatments

lori67

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Re: Newly diagnosed – frightened, depressed and anxious
« Reply #43 on: February 18, 2008, 11:22:03 am »
As a nurse who's worked in the OR - trust me when i tell you - you don't want to know what goes on in there when you're asleep!   :D  Nothing horrible, but you do have to entertain yourselves after being stuck with the same people in a small room for 8 hours straight!

You don't get the bolts in your head until you go for a BAHA!
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.

leapyrtwins

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Re: Newly diagnosed – frightened, depressed and anxious
« Reply #44 on: February 18, 2008, 01:54:48 pm »
David -

minister or doctor roles? Just think, if any parts come up for a doctor who needs to perform AN surgery, you're a shoo-in.  Now that you're an experienced postie, you have a leg up on the competition - who probably won't even know what an AN is  ;D

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