Author Topic: Dealing with my new AN diagnosis  (Read 10871 times)

designergal

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Re: Dealing with my new AN diagnosis
« Reply #15 on: April 05, 2011, 06:45:22 pm »
Hi there...a little late chiming in!
I just had surgery 5 weeks ago and have three little ones, 6, 3, and 9 months!  My surgery was in NC and I live in PA.  We just told the kids that Mommy had to go to the doctor and would be gone for a week.  My parents took care of them while we were gone.  They didn't find out that I had surgery until we returned...my 6 yr old tends to worry and we didn't want him to be upset all week.  When I got home, they were great!  They  are helping out a lot and seemed to understand I need my rest and that they need to be quite in the house.  We keep them busy with outings, play dates, and school!  They ask to see my boo boo.....and kiss it better!  They are doing great and are very helpful!

Good Luck!

MandaPanda

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Re: Dealing with my new AN diagnosis
« Reply #16 on: April 07, 2011, 08:08:15 pm »
Thank you for telling me that, designergal! Very reassuring!

We have a date!!! After looking at my 3rd MRI, Dr. Kutz said that we need to go with the translab approach. I'm saddened by the thought of losing my left side hearing, as I'm a singer. Wondering what singing will be like post-op...so anyway, surgery is on April 28th--three weeks from today. When they first told me that date, it seemed so far away, but now I'm in panic mode, trying to get everything organized and planned so life stays as normal as possible for my girls! It's almost like that same nesting feeling I had about one month prior to having my girls:) Thank you all SO MUCH for your advice, accounts, and encouragement! This is an emotional, scary time for me, and you've given me a place to go to learn, vent, and empathize! Invaluable!

Sending out God's love and light to you all tonight,

Amanda

Jim Scott

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Re: Dealing with my new AN diagnosis
« Reply #17 on: April 08, 2011, 01:46:23 pm »
Hi, Amanda ~

Congratulations on securing a date for your surgery.  Your pre-op panic is fairly typical, especially when you have young children to consider.  I'm sure you'll be able to get everything in order, in time and that your girls will be fine.  I'm pleased to learn that the ANA forums have been helpful - just as they are intended to be.  We'll be here for you Amanda as you approach the Big Day and of course, during your surgery as we think of and pray for you, then post-op, during your recovery as we continue to advise and, most of all, support you. 

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.

jaylogs

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Re: Dealing with my new AN diagnosis
« Reply #18 on: April 08, 2011, 10:37:13 pm »
Yaaaay!! Doesn't it feel great to have a date finally? For me that was the worse part of the whole process.  But now that you got your date set, all you have to do is kick back and hand the reigns to someone else and go along for the ride! It sounds like you are really happy with your choice of docs, so that a definite positive!!!  Good luck and keep us posted on how you are doing up to and of course after the surgery.  By the way, there's an awesome website out there, www.caringbridge.org where you can set up an account (for free).  From there you can blog your experiences and updates before and after surgery and any friends or family can give leave their email addresses so if you do make an update, they'll get automatically get a notification via email that you did so and they can go in and read whatever was posted. They can also leave comments in your "Guest book" so this is also a great way of getting reassuring messages from your loved ones.  This was a great way for my wife to give everyone updates without having to go through different emails, facebook, twitter, etc.  Click the link at the bottom of my signature block thing here and you can see for yourself how we did it.  You can even post pictures on it as well. 

Good luck and hope you are doing well!
Jay
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

CHD63

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Re: Dealing with my new AN diagnosis
« Reply #19 on: April 09, 2011, 06:24:36 am »
Amanda .....

So glad you have a date!!  Hopefully that will help you to focus now a little more.  The unknown is what always gets me.  Now you can make concrete plans.  Try to just think about making sure all arrangements are made for afterwards and then relax and enjoy your family and do fun things ..... whatever is a great distraction.

I, as well, can empathize with you (I will PM you because I do not want to take away from this thread) in many, many ways ..... but especially since I, also, am a singer and a pianist/organist and I was so sad at the thought of losing my one side hearing.  Following my first surgery in February, 2008 I retained approximately 20% of my hearing and use a hearing aid.  It has been an adjustment, but I have still been able to sing in two choral groups and do occasional accompanying.  (I had actually retired from full-time work before the diagnosis of the AN.)  With singing, it is a matter of your brain learning the new input of sound and I think you will be able to do that, but it may take some time.  If you sing in choral groups, the biggest issue is your placement in the group, since the input of sound will only be from one side.  In my case, it has been manageable and I am still able to sing.  My bigger issue is one of balance, which does not affect my singing, of course.

More on this, but I am very curious to hear more from singers who have a BAHA (bone anchored hearing assist) ..... this is something for you to consider, as well.

Many thoughts and prayers as you prepare for surgery.

Clarice
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

mk

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Re: Dealing with my new AN diagnosis
« Reply #20 on: April 09, 2011, 09:08:02 am »
Hi Amanda,

we will be having our surgeries the same week, mine is scheduled on the 26th. I totally share the nesting feeling, and it reminds me too of the month leading to the birth of my kids. There is so much to take care of, especially for us with young kids. I have a huge to do list, but at least it feels good when I check items off the list.
Hang in there, our dates are approaching!

Marianna
GK on April 23rd 2008 for 2.9 cm AN at Toronto Western Hospital. Subsequent MRIs showed darkening initially, then growth. Retrosigmoid surgery on April 26th, 2011 with Drs. Akagami and Westerberg at Vancouver General Hospital. Graduallly lost hearing after GK and now SSD but no other issues.

msmaggie

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Re: Dealing with my new AN diagnosis
« Reply #21 on: April 11, 2011, 07:17:01 pm »
The  hard part is over, and now all that is left is the details.  Do what you can to get ready, and then just let the rest go!  You will find that it all works out in the end.  Good luck with your surgery and keep us posted!

Priscilla
Diagnosed  left AN 8/07/08, 1.9 CM
Surgery 12/10/08 at Methodist Hospital w/Vrabec and Trask for what turned out to be a cpa meningioma.

lauralynn

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Re: Dealing with my new AN diagnosis
« Reply #22 on: April 12, 2011, 05:44:32 pm »
Hello Amanda,

Welcome to the forum!  You are now part of the AN family and we will be here to help you every step of the way.  I did not see the surgeons you mentioned but I had young ones at home (8 and 10 at the time).  My older children live with their father and they were 16 and 18 at the time.  The older two knew what was going on but the younger ones...I told them that Mommy had something wrong with my ear and the doctors had to fix it.   I guess it will depend on the child what you tell them. I'm a single mom so my little ones went to stay with their Dad for a few months til I was strong enough to have them come home to me.  I didn't let them come see me in the hospital til I was out of ICU and more alert.  Even then it was hard for all of my kids to see Mom laying in bed with all sorts of tubes in her.  I had a large AN and so after surgery the AN side of my face drooped.  Honestly my kids never mentioned anything about my face (mine was noticeble) and 2 years post op now...all 4 of them tell me (often) that I look really good.  When we pray at bedtime my little ones always pray for my health to keep getting better.  I met ChristineH on this forum and shared it with the kids and they asked me how she is doing and made sure I knew they prayed a long time for her (she just had her surgery last week).  ChristineH is doing great and you are going to do great too!  Your kids will be fine too...my 10 yr old daughter to this day still keeps a close eye on me.  If I drop something in the shower....she is right there, " You ok Mommy?"  I will add you to my prayer list.  Focus on the positive things.  For me...what keeps me going is my kids.  Will anyone be able to post for you when you are in the hospital?  A great friend of mine posted for me while I was in.  She'd call me and I'd give her updates and she'd post them.  Just a thought.  Your AN family is always here for you.  Stay strong and keep in touch.

God Bless,

Laura Lynn 
4 cm left AN/diagnosed 1/23/09
Translab 4/14/09
Cyberknife 7/09
Gold weight implant 8/09
Barrow Neurological Institute, Phoenix
Dr. Syms and Dr. Porter
Balance issues, 100% hearingl loss (left ear), tinnitus, facial numbness/pain,
chronic fatigue, weakness, eye issues

God Bless everyone

Sue

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Re: Dealing with my new AN diagnosis
« Reply #23 on: April 12, 2011, 06:47:50 pm »
I am late with this, but welcome and best of luck to you with your treatment and recovery.  You can read my blog if you want.  Link below. 

Sue in Vancouver, USA
Sue in Vancouver, USA
 2 cm Left side
Diagnosed 3/13/06 GK 4-18-06
Gamma Knife Center of Oregon
My Blog, where you can read my story.


http://suecollins-blog.blogspot.com/2010/02/hello.html


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