Author Topic: Need all of your positive thoughts going into Monday!  (Read 7357 times)

ksiwek

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Need all of your positive thoughts going into Monday!
« on: April 23, 2010, 09:34:55 am »
Hi there...its the pregnant lady again...slowly going crazy!!!!

So I am having an MRI on Monday to see what my tumor has been up to and if we can continue as planned with my c-section and surgical dates. It has been 2 months since my last MRI.   I know that odds are all will be stable, but I am still nervous.  They are really looking to make sure that the pressure on my brain stem hasn't increased due to tumor growth or pregnancy edema (swelling).  If all is stable then I have less than 7 weeks before baby is here and 11 weeks until AN surgery. 

I do feel more light-headed since my diagnosis 2 months ago, but I know that can happen with pregnancy too.  So frustrating that many symptoms mirror each other and there is only one way to find out.  I also think that some symptoms become more obvious once you know there is something causing them...and I am hypersensitive to it all.

So I am asking for your positive thoughts and prayers!!!!

I will keep you posted.  This waiting period is so incredibly difficult!  I am ready to put this all behind me...ugh!
Translab 6/4/10 for 4+ cm left AN.  Drs Friedman and Schwartz at HEI saved my life!
BAHA surgery on 10/7/10 with Dr Battista of Chicago Ear Institute (Oticon Ponto Pro)

Lizard

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Re: Need all of your positive thoughts going into Monday!
« Reply #1 on: April 23, 2010, 09:47:28 am »
You are in my prayers for a great MRI!  You're almost there....just a couple more months, this is the finish line...light at the end of the tunnel or what have you.  Hang in there.
Take care!
Liz
Left AN 2.5CM,retrosigmoid 11/2008, second surgery to repair CSF leak. 
Headaches began immediately.  Dr. Ducic occipital nerve resection, December 2011!!!!!

"When you come to the end of your rope, tie a knot and hang on"
-Franklin D. Roosevelt

grega

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Re: Need all of your positive thoughts going into Monday!
« Reply #2 on: April 23, 2010, 09:54:04 am »
Hi Kris(?) ..... yep, you sure are in our prayers!!!!!!!!!!   Just have a lotta family and friends around you for support, and to get your mind off things for a while, as diversions might just help.

Best to ya!

Greg
1.5 cm AN retrosig 11/04.
Drs. Henry Brem & Michael Holliday @ Johns Hopkins, Baltimore
SSD right. Tinnitus big-time, only when thinking of it.
BAHA since 7/20/10 ... really helps w/ hearing, specially after programming in subliminal message: "Hey, don't listen to your tinnitus!"

sunfish

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Re: Need all of your positive thoughts going into Monday!
« Reply #3 on: April 23, 2010, 03:08:13 pm »
Lots of prayers for you this weekend!  Get lots of rest!
Rt. side 14mm x 11mm near brain stem
Severe higher frequency hearing loss
I use a hearing aid (Dot 20 by Resound)
Balance issues improving!!!!
Cyberknife March17, 2010
Roper Hospital Cancer Center, Charleston, SC

Jim Scott

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Re: Need all of your positive thoughts going into Monday!
« Reply #4 on: April 23, 2010, 03:13:33 pm »
Kris ~

Your stress and frustration are very understandable.  I think you'll do fine and of course, you'll be in the thoughts and prayers of many for the next few days.  Try to stay strong. :)

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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Re: Need all of your positive thoughts going into Monday!
« Reply #5 on: April 23, 2010, 03:22:26 pm »
Don't worry, if you're slowly going crazy now, it'll just make it that much easier to go completely crazy in a hurry once the baby arrives!  It's inevitable!  :D

We've gotcha covered on the positive thoughts and prayers.  Make sure to let us know how it goes.

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.

ksiwek

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Re: Need all of your positive thoughts going into Monday!
« Reply #6 on: April 26, 2010, 01:20:58 pm »
My MRI is completed and the scans have been fedexed to House.  Now I wait...ugh!  The weather is beautiful here in Wisconsin today at least!  I am going to assume all things are stable...why not!?!  I am not even looking at the images from today....why make myself crazier!  I will keep you posted when I hear from LA tomorrow or Wed.

Also, had my MRI at a brand new hospital today.  It opened a month ago.  The MRI machine seemed quieter than my previous MRI (not attributed to hearing loss  ;D)  Has anyone else found that these machines have gotten quieter over time?
Translab 6/4/10 for 4+ cm left AN.  Drs Friedman and Schwartz at HEI saved my life!
BAHA surgery on 10/7/10 with Dr Battista of Chicago Ear Institute (Oticon Ponto Pro)

HeadCase2

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Re: Need all of your positive thoughts going into Monday!
« Reply #7 on: April 27, 2010, 07:17:07 am »
Hello Kris,
  Best of luck with the MRI readout.   I know what you mean about being super sensitive to any potential affects of the AN once you have a diagnosis.  It all too easy to attribute everything that comes up to the AN.  Just know that with time, AN won't occupy your thoughts so much.   
  And best of luck with the new baby!

Regards,
  Rob
1.5 X 1.0 cm AN- left side
Retrosigmoid 2/9/06
Duke Univ. Hospital

GrogMeister of the PBW

ksiwek

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Re: Need all of your positive thoughts going into Monday!
« Reply #8 on: April 27, 2010, 08:29:43 am »
Thanks everyone!  I am just working, trying to take my mind off of the impending phone call from the doc.  Either way, resolution, right!?!

Donnalynn,  go ahead and give me a call whenever convenient for you...would love to catch up!
Translab 6/4/10 for 4+ cm left AN.  Drs Friedman and Schwartz at HEI saved my life!
BAHA surgery on 10/7/10 with Dr Battista of Chicago Ear Institute (Oticon Ponto Pro)

MamaGina

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Re: Need all of your positive thoughts going into Monday!
« Reply #9 on: April 28, 2010, 08:06:52 am »
Kris, I know how very hard this is. you have my prayers. I'll put you on the prayer list at church too. keep doing what you can to keep your mind off it.
L 3.0 cm AN resection via retrosigmoid approach 10/2000;
CSF leak repair w/mastoidectomy one week later. 
chronic headaches, vertigo, fatigue, facial paralysis, SSD, and more!

ksiwek

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Re: Need all of your positive thoughts going into Monday!
« Reply #10 on: April 28, 2010, 01:14:28 pm »
So.....

Dr wants to move everything up...baby in 3 wks now and surgery in 6.  Now I am just busy getting it all scheduled.  He doesn't think the tumor has changed much, but felt that the compression on the brainstem was worrisome.  He was the only surgeon that I have consulted with that was willing to let me get to term with this pregnancy, so I am not questioning the need to move it up.  He wouldn't unless it was warranted.  Now I will start on steroid injections to help mature baby's lungs.  It's all so scary, but soon will be over....

Here we go.....
Translab 6/4/10 for 4+ cm left AN.  Drs Friedman and Schwartz at HEI saved my life!
BAHA surgery on 10/7/10 with Dr Battista of Chicago Ear Institute (Oticon Ponto Pro)

Lizard

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Re: Need all of your positive thoughts going into Monday!
« Reply #11 on: April 28, 2010, 02:56:09 pm »
Kris,
Well its good to know that the Dr is looking out for your best interest as well as the interest of your unborn child.  Three weeks!  We'll keep praying everything goes well and according to plan.
Hugs for you,
Liz
Left AN 2.5CM,retrosigmoid 11/2008, second surgery to repair CSF leak. 
Headaches began immediately.  Dr. Ducic occipital nerve resection, December 2011!!!!!

"When you come to the end of your rope, tie a knot and hang on"
-Franklin D. Roosevelt

opp2

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Re: Need all of your positive thoughts going into Monday!
« Reply #12 on: April 28, 2010, 09:09:44 pm »
oh my...good wishes, good wishes, good wishes, good wishes.....
Diagn Apr 14 2009 with 2.5 cm lt AN. - numbness in the face and sudden onset headaches accompanied by balance issues. Consults with Drs in S Ontario, California (House) and Vancouver. Picked Dr. Akagami in BC.
Retrosigmoid July 6, 2010, 3.0cm by then. SSD left, no other significant side effects.

moe

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Re: Need all of your positive thoughts going into Monday!
« Reply #13 on: April 30, 2010, 11:51:30 pm »
Kris,
Wow, just now reading this thread. A new baby AND an AN. Is this your first baby?

My prayers are going out for a successful delivery AND surgery and motherhood. You sound very brave. Keep your chin up :)
Maureen
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

newmommyLA

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Re: Need all of your positive thoughts going into Monday!
« Reply #14 on: May 03, 2010, 10:19:29 pm »
Hey Kris,

I can only imagine how anxious you are to have two huge events coming at you with very little time to prepare.  I am a new mother who had surgery at HEI last Oct. when my boy was only 3 months old.  I did not experience the urgency that your dealing with now and my heart goes out to you.  I elected to have my surgery without any delay b/c I wanted to get back to my son ASAP.  I've followed so many stories on this forum and actually have a friend from home who had a large AN and her journey.  Contrary to what you might think, the smaller tumors don't always have the best outcome.  We never know what is going to happen and we all have different experiences post op.

The birth of your son will be the greatest joy you've ever known and you'll be determined to get well and back to life as his Mommy.  You have chosen excellent surgeons and are in the best possible care.  Your husband is also incredibly supportive and I'm sure you're going to get through this.

I live in Pasadena and would be happy to talk to you on the phone and perhaps meet up with you if you're interested.  I'm taklng my first vacation (6 months post op) to beautiful Destin, FL where the oil spill is headed right now!  We leave May 16 and return on the 26th.  Who is delivering your baby?  I know you'll have some time after his birth and I would be very happy to meet you if you are interested.  Are you staying in LA the whole time?

I've read your posts and been thinking about you for a while now.  You are in my prayers.

God Bless,
Amy
6mmx8mm AN rt side.  Mid-fossa surgery HEI House/Schwartz 10/28/09.  Temp facial paralysis (8 weeks), SSD, severe tinnitus & hyperacusis, tumor all gone.  12/23/09 cochlear nerve section (trying to reduce tinnitus) no major improvement on tinnitus. Trying biofeedback/neurofeedback for tinnitus.