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Author Topic: CA Newbie  (Read 4520 times)

Myjoyjordan

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CA Newbie
« on: November 09, 2009, 09:11:37 pm »
I am new to the board. I am 29 and got diagnosed 4 months almost with AN. It was 4cm and we did surgery. It all started last year when I got pregnant. I got vertigo but thought it was part of the pregnancy process (or so my ENT told me) and it would go away after I gave birth. Once I did the vertigo got worse. I got a second opinion and had an MRI (which I vcouldn't do whenI was preggo) and the AN was dscovered as the cause of my vertigo. I decided to have surgery to reduce the AN because removing it totally would permananetly damaged the nerves on the left side of my face and I didn't want to scare my kids.

After surgery I caught Menigitis and ended up staying in the hospittal for 3 months & now I have a shunt in my head. We will do radation in a few months on the remainder of the AN. I lost the hearing in my left ear and am weak on the left side but my surgery was in Aug and I am still rehabbing. However, it's hard to rehab with a newborn but at least I am alive!!
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CHD63

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Re: CA Newbie
« Reply #1 on: November 09, 2009, 09:55:06 pm »
Myjoyjordan (love your user name!) .....

Welcome to this Forum and so glad you found us.  You had a whopper of an AN, plus an unfortunate (and unusual, I might add) complication during your recovery.  You will find here a very sympathetic and understanding group of people.  You can always come here to vent any frustrations you may have, as well as ask any questions.

Having a new precious bundle is a big motivation to work on your rehab as you are able.  Remember our motto, rest first, then exercise as you can (just walking is good exercise), then rest.  Notice that is twice as much resting as exercising .....  I assume you have someone with you full-time to help with the household ..... your job is to get well and cuddle that sweet baby, someone else should do everything else for awhile.

Let us know how you are doing.

Thoughts and prayers.

Clarice
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Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

gingerbread6

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Re: CA Newbie
« Reply #2 on: November 10, 2009, 06:11:02 am »
Hi There,

Welcome to the group. I do hope that you are feeling much better and recouping nicely at home. Enjoy your new baby too. Sorry to hear that you had such a tough road. Keep up your spirits, we are all rooting for you. You are a strong, young person and we are here to support any way that we can. You are in my thoughts and prayers.

I wish you a speedy recovery. God Bless.

Gingerbread6

How old is Jordan now? I have a six year old daughter who is the love of my life. Enjoy her.
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suboo73

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Re: CA Newbie
« Reply #3 on: November 10, 2009, 07:30:34 am »
Hi!

So glad you found this FANTASTIC forum, wonderful folks here who will listen and hopefully help you along the way.
You are so young - can't imagine going thru this at your age! [I am 50+].
But the good news is you ARE young and that should aid you in your recovery.
You have been thru so much - rest and take care of your precious baby - that should be plenty of exercise.

All my thoughts and prayers to you and your extended family.
Sincerely,
Sue
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suboo73
Little sister to Bigsister!
9mm X 6mm X 5mm
Misdiagnosed 12+ years?
Diagnosed Sept. 2008/MRI 4/09/MRI 12/09/MRI 1/21/11
Continued W & W

Debbi

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Re: CA Newbie
« Reply #4 on: November 10, 2009, 08:08:35 am »
Hi and welcome to the Forum!

To echo Clarice - you had a whopper of an AN and a whopper of an experience!  Holy cow.  I can't imagine going through post surgical recovery with a newborn - I think you deserve a medal! 

Glad you found us.

Debbi
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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

epc1970

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Re: CA Newbie
« Reply #5 on: November 10, 2009, 09:12:45 am »
Hi
Welcome to our little group! I simply cannot imagine having a newborn to take care of after such a big surgery. You are one tough cookie! My tumor was 3.8 cm so I can identfy a little bit with how you must be feeling. I had a little fine motor skill weakness on my AN side post surgery as well  and it did improve...slowly. I found the more I used that side to do everyday things-even if it was clumsy-the better things seamed to get. Keep your eye on the ball-your precious new baby-and that will pull you thru this. You have such great things to live for! Take care and I wish you a continued recovery without further complications!
Erin
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Myjoyjordan

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Re: CA Newbie
« Reply #6 on: November 10, 2009, 11:58:20 am »
Thank you SO much for the love and support. It means so much because no one understood what I was going through. It is hard but I have the help of my mother (who helps A LOT) and my husband. I ended up having 5 procedures on my head and had 3 seizures while in the hospital. I had/have days where I want/wanted to give up but it's amazing how strong you can be when you have no other option. I couldn't leave my girls without a mother. I still have to do radiation which I am nervous about. My girls:
Jordan is 8
Aaliyah is 3 1/2 months
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CHD63

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Re: CA Newbie
« Reply #7 on: November 10, 2009, 12:47:53 pm »
So glad you have your mother with you!  You have been through so much and to be posting here is a major accomplishment for you!  Congratulations!  Hang in there .....  The radiation part should not be anywhere near the trauma you have been through.  I'm hoping Moderator Jim will post soon because he had a big AN that was debulked in surgery, followed by radiation and he has done extremely well.

I had an 8 year old girl when our youngest son was born (although I also had a 4-year-old in between) and she was a tremendous help.  It is amazing what an 8-year-old can do when needed, as I am sure you are finding with Jordan.

Thoughts and prayers continue.

Clarice
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Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

Vivian B.

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Re: CA Newbie
« Reply #8 on: November 10, 2009, 02:23:22 pm »
Welcome to the forum. I am sorry you had to go through all that but glad you found this forum. Although you have had a hard time, stay positive and keep strong. You are young and you will get better.

Vivian
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CPA AN(most likely meningioma) 1.6cm by 1.5cm by 1.9cm diagnosed early March 09. Watch and Wait.

Jim Scott

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Re: CA Newbie
« Reply #9 on: November 10, 2009, 04:34:39 pm »
Hello and welcome, Myjoyjordan  ~

Although I'm a little late I want to extend another welcome to you while offering my commiseration for the difficulties you've had to endure that were associated with your AN surgery.  Thankfully, that is now in the past and you're recuperating while caring for and enjoying your newborn baby, Aaliyah.  I assume the baby is named after the singer, Aaliyah (Haughton) who died in a plane crash in 2001 at age 22.  Fortunately, you have your mother and husband to help and I sense that you're intensely determined to get through this, so I'm confident that you will.  As you noted in your last post, it's amazing how strong you can be when you have no other option.  Our children are always great motivation  to get well because we know how much they need us (and vice-versa). 

Thanks for taking the time and making the effort to register and post.  You're definitely among friends here and are welcomed and encouraged to ask questions and offer your own comments.  :)

Jim
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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.

Rivergirl

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Re: CA Newbie
« Reply #10 on: November 10, 2009, 07:37:47 pm »
Sorry you had such a hard time, you are young and determined so hoping you will continue to get better.  Children are such a driving force, makes you forget about yourself and keep putting one foot in front of the other whether you feel like it or not.  Good luck and keep us posted.
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Diagnosed 6/2008
Right AN 2cmx8x9
Sub-Occipital at Mass General with Martusa and McKenna on 5/31/11
Right SSD, very little taste
I think I will make it!

Adrienne

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Re: CA Newbie
« Reply #11 on: November 11, 2009, 06:58:05 pm »
Wow, what a story.  You've been through so much, I seriously can not imagine.  I'm glad you are home now, and slowly starting to recover.  It's great that you have an understanding (and helpful) hubby, and mother.  You definitely need help and support through this.

I'm glad you're on the other side.  You have a great attitude about it all, and I'm sure that will fuel your recovery even more in the future.  Good luck with the radiation.  Keep us posted.

Cheers,
Adrienne
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3.0 x 3.0 x 2.5 cm AN, left side.  Diagnosed Feb. 19th,2009
Retro Sig surgery with Dr. Akagami and Dr. Westerberg on May 26/09 at Vancouver General Hospital
SUCCESS! Completely removed tumor, preserved facial nerve, and retained a lot of hearing. Colour me HAPPY!

Mickey

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Re: CA Newbie
« Reply #12 on: November 11, 2009, 08:33:36 pm »
Welcome! I`m hoping you`ll find this a nice place to communicate while your recovering. There are so many prayers for you in this healing process. Will be looking fowards to see your recovery. My best wishes, Mickey
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jaylogs

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Re: CA Newbie
« Reply #13 on: November 11, 2009, 09:56:14 pm »
I echo everyone's comments and hope your spirits are lifted whenever you see your little bundle of joy!  I too cannot imagine what you have gone through as I am pre-op.  I hope I have to fortitude you are showing if I have similar problems post-op.  Please vent to the group here whenever you are feeling down...you aren't alone in this! 

Take care, Jay
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8.1mm x 7.8mm x 8.2mm AN, Left Ear, Middle Fossa surgery performed on 12/9/09 at House by Drs. Brackmann/Schwartz. Some hearing left, but got BAHA 2/25/11 (Ponto Pro) To see how I did through my Middle Fossa surgery, click here: http://www.caringbridge.org/visit/jaylogston

ncutt

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Re: CA Newbie
« Reply #14 on: November 12, 2009, 10:37:28 pm »
Oh, wish I could do more for you.  Sounds like alot of the worse is behind you and hopefully after all you have endured the rest will seem easy peasy.  You have found a wonderful support group!
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