Author Topic: Oh My Gosh .... I thought I was so ready but my heart just skipped a beat ......  (Read 3959 times)

Denisex2boys

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Well ....... - I finally got a date ...... it is just so weird - - I had posted about my hubby being off at the beginning of summer (he had carpel tunnel surgery) - well, he just starts back to work and 'boom' I hear from LHSC to come in for another hearing test and they schedule it right away - that was on the 26th of Sept.

So I am at work today minding my own business and I get an email from the Coordinator that I am tent. booked for Oct. 16th!  That is ONLY 2 weeks away!

I thought I was ready!  - I knew this day was coming but I guess after 7 months of waiting and hearing nothing I really didn't expect it to get here ... I guess I just assumed I would be given more notice or something ... I am relieved in a sense and have faith in my Dr.'s but my 'baby' turns 5th this month on Halloween - - it's Halloween, the kids have birthdays to go to, I have Parent Council meetings - I just feel a wee bit over whelmed with it all right now .......  - I don't want to miss out on all that :(
- Oct. 16/08 - 12 hour 'blob-ectomy' at LHSC in London, ON - Dr. Lownie and Parnes
- Some internal facial numbness (cheek, tongue, eye), SSD, headaches (getting better), dry eye, some balance issues..... but othwise AWESOME!

Tamara

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Hey Denise,
  Take a deep breath...it will all be OK.  Hopefully, you'll be surprised at the people that come out of the woodwork to help - let them!  That means, skip the parent meetings and anything else that can function without you.  By all means, have fun at Halloween (I sort of wish I'd had surgery at Halloween - I had some great stitches and bandages) and your baby's birthday - just let everyone help out.  You'll never have a better excuse for taking it easy - you can have all the fun without all the work!

You'll be ready - don't worry -
Peace,
Tammy
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...

Jim Scott

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Denise:

As a mother of young children, your worry about 'being there' for them is perfectly natural.  The reality is that you have serious surgery on your schedule and you're going to be sidelined for awhile.  Not incapacitated (well, maybe for a few days) and certainly not permanently sidelined, but definitely not able to everything you're used to doing - for awhile, anyway. 

When time passes and nothing seems to happen it's easy to put something unwelcome (like AN surgery) on the back burner of our consciousness, but now, seemingly all of a sudden, you have a surgery date and this whole brain surgery thing is realOf course you're a bit overwhelmed.  My best suggestion is to follow Tammy's astute advice and 'take a deep breath' while allowing others to take over some things you can't do while you recover.

The good news is that you'll soon be rid of your AN!  I pray your upcoming surgery will be extremely successful as well as uneventful and that your recovery is both rapid and complete.  :)  Meanwhile, try to be calm and stay strong.  We're all rooting for you, Denise!

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.

lori67

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Wow Denise.  I'll bet that knocked you for a loop, huh?

But, it will work out.  Forget about the parent council meetings.  If your baby is only 5, you've got many, many years of those ahead.  Missing one or two won't hurt you or your kids.  And I can guarantee, all those other parents at the school are going to want to step in and help you out any way they can, so let them.  You know you'd do the same for them.

And Tammy is right, you'll probably have the best Halloween costume of all!  I have a feeling your boys will be jealous of it - boys just seem to like staples and things in people's heads don't they?  If your kids are anything like mine, they'll be showing off your new battle scars to anyone who stands still long enough!  You can still have the birthday celebration and the Halloween stuff, just let some people help you out a bit.  Or postpone it!  Take it from a military family - you don't have to celebrate all holidays the same day everyone else does - we've had Easter in January, Valentine's Day in April and Thanksgiving in August, so you can certainly have a birthday party any day of the year!

Now, back to that deep breath you were supposed to be taking....

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.

Dog Lover

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Hi Denise. I have a question for you. Did they give you a choice of dates? When I was diagnosed and saw my surgeon I asked him how long I could wait. He asked if I had a vacation planned and I did. He didn't have a problem with me waiting until i returned. So between that and his schedule, my surgery was  scheduled 2 months later.

If this is really bad timing for your family and your surgeon doesn't have a problem with rescheduling, it's worth a shot. If that's not a possibility, then I'm betting that you will be amazed at how much you can get done in a short period of time, preparing, planning, etc. You really have to go with what your doctor determines is the right time (and their schedules....)

From my own experience, the first week after the surgery I was pretty much out of action. When I got out of the hospital, it was amazing how I felt so much better - immediately. I would have been able to enjoy a birthday, watching the halloween kiddies....everything would have just been much slower than normal, and someone else would have been doing all the work while I sat by and watched them!  ;D

Cathy
Cathy
9mm x 3mm Left Side AN
Mid Fossa Aug. 21, 2008
Dr. Gantz / Dr. Woodson
Univ. of Iowa Hospitals and Clinics
No facial issues, hearing saved, I keep active and feel back to normal.

wendysig

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Hi Denise,
My neurotologist also gave me a choice of dates and since I was also going on vacation, I picked the one that was best for me, with the proviso that it was good for everyone, otherwise I would have changed my plans.  To me having the surgery was my top priority.  However, I had put my surgery off until July (my AN was diagnosed on April 3 and I had made my deciision regarding treatment by May 14) because my oldest daughter was graduating from middle school and both of my daughters had their dance recitals in the middle of June and I  didn't want to miss any of that.   If you have things  that are important to you coming up and it is medically okay to postpone surgery, you should ask.  Keep in mind though thatthe holidays are coming up and postponing surgery might be more difficult for both you and your doctors.  On the other hand, keep in mind that it is okay if you have your surgery and just let everyone handle things while you just get to sit back and hopefully enjoy them.  Having your surgery now doesn't mean you won't be able to enjoy Halloween or your soon to be five yera old's  birthday.  Someone else can handle the other things you planned to do.  This is a time to put YOU first.  Everything else will work out.

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!

Debbi

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Hi Denise-

Yes, no matter how much you think you are ready, getting the date kind of takes your breath away, and not in a good way!  However, the upside of doing it now is that you should be feeling pretty good by Thanksgiving and the holidays.  And, as Tammy pointed out, you may have a great ready-made Halloween look!  (And hopefully you'll just have the impressive scar, not the Pirate Smile!)  So, take a couple of deep breaths and repeat after me - I will be okay, I will be okay...

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

Mathilda

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Hi Denise,

If the date is not changed there will be a lot of praying going on on that day. I have my surgery on the 16th as well !
Advantage is: we'll be "all done" in a couple of weeks. I've known for 10 days now. I've taken a time out from other things and am focusing on a positive outcome.
Hope you'll be able to do the same as it will definitely be a good contribution. Wish you the best

Mathilda
Diagnosed in 2006. Recent growth from 7 to 11mm.
Middle fossa surgery at House Ear Clinic on October 16th 2008.
With the results I hoped for: hearing saved; no facial problems.
Just wobbly headed; in need of patience ;)

Omaschwannoma

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Remember good comes from bad, there's always a silver lining in the dark cloud, it's the yin and yang of life working to balance itself. 

Your family will find the balance while you are "out of commission" for a bit.  There's no good or right time for this surgery as much as we plan our butts off for everything involving AN's it never works out the way we would like.  Know that your family will learn valuable lessons here while you are recovering and how family comes together when one of the members is down.  You'll be proud of their re-committment (is this a word, doesn't look right?) to one another.  They will be happy to show you how grown up they can be for mom and that mom can count on them. 

All my best to you and your family, you'll be fine!  Like Lori and others have said, breathe slow and take it all in. 
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

4cm in Pacific Northwest

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All good advice above.

You CAN do this Denise!

HUGS
DHM
4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!

Kaybo

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Denise~
HI!!  I was just thinking about you and thinking that I was missing you!!  Take a deep breath and all will be OK!!  I will try to write you more later...just wanted you to know that I was thinking about you!
Prayers to you,

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!

MAlegant

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You know, it's just like having children; you're never really ready no matter when it happens.  There's nothing to it but to do it!  Soon you'll be a postie and a darn good one at that.
Best,
Marci
3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.

andrea in slc

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Holy cow, my heart would have skipped at least a beat, if not several! At least you know the date now and can plan around it. I agree with everyone else, you can do this, just take it slowly and get lots of help. And your kids will be so jealous of your Halloween costume!  ;)  Take a deep breath, grab the calendar and a pen, and things will work out, with help!

I'll be thinking of you on the 16th!

Andrea

leapyrtwins

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Denise -

I was wondering what was going on with you - and now I know  ;D

I know how long you've waited for this "date" so I'm glad to see you've finally got one - even if it's not the most convenient time for you.

As others have said, take advantage of the help that others are sure to offer you and don't worry about missing events like the parent meetings.  After all, you are having brain surgery, which is the best legitimate excuse I know of  ;)

While the "events" you mention are certainly important, so are you and you need to do what you need to do.

Best of luck.  I'll be thinking of you and praying for you.

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

Tumbleweed

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Hi, Denise:

As Dr. Chang (neurosurgeon at Stanford) once said to me when I was agonizing over treatment dates, "there is never a perfect time to schedule treatment." That is, it's a busy world and it never stops turning to allow AN treatment without schedule conflicts.

Your 1.93cm tumor is not huge, but it's also not tiny. Better to cut that freeloader out now before it asks you to sacrifice more of your bodily functions. Your health comes first. You'll be glad you got it over with and are on the road to recovery, once your surgery is history.

And it's normal to have your heart "skip a beat." This is a very big deal. I was conflicted about it right up until I got treated. You don't have to feel completely at peace about your surgery in order to know what you have to do. One of the biggest lessons for me -- being the control freak that I am -- was finally surrendering to the journey and placing my trust in my doctors.

You're going to be okay.

Best wishes,
Tumbleweed
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08