Author Topic: WOW  (Read 7940 times)

kaylene

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WOW
« on: March 26, 2012, 06:06:15 am »
I have spent a couple of nights cruising the walls of this forum.  And I have been reduced to tears, I have been made to smile and I have been given hope. 
Such an amazing place to find this.

Let me introduce myself.  I actually draw a lot of parallels with another newbie.  I am a 36 year old mother living in Australia (Melbourne at the moment).  I was diagnosed 5 weeks ago with a 30mm AN.  In two days time it will be removed and I shall begin my recovery.

I have done very little research up until two days ago.  I was more than happy to let my husband find out everything we needed to know.  But he does tend to over look the human stories in his retelling, so I am more than happy that I have found this site.

From this forum i can see that every AN journey is different and I hope that mine will be a positive one.  So thanks for the comfort and I think now I will get back to reading about my upcoming rollercoaster ride.

Kaylene 
30mm AN removed March 2012
In Melbourne Australia.
I now have SSD (RS) and tinnitus.
Good recovery, not to many issues.

MDemisay

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Re: WOW
« Reply #1 on: March 26, 2012, 08:28:28 am »
Hi Kaylene!

Yes, welcome to a wonderful support group use the recourses you'll find here and the people can be a tremendous boost as well! They have been for me and countless others, this is a place where you can be yourself and research and vent your frustrations about this wondrous AN diagnosis that we all share. Who knows, you may be inspired to name yours in an effort to gain control over it, I did mine.

How's the weather down under? Keep posting and good luck with your operation!

Mike

1974 - Dr. Michelson  Colombia Presbyterian removal of 3 Arterio Venous Malformations
2004- Dr. Sisti  NY Presbyterian subtotal removal of 3.1 cm AN,
2012 - June 11th Dr. Sisti Gamma Knife (easy-breasily done)"DEAD IRV" play taps!
Research, research, research then decide and trust in God's Hands!

CHD63

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Re: WOW
« Reply #2 on: March 26, 2012, 08:35:46 am »
Hi Kaylene and welcome to this forum of caring, supportive new friends .....

Keep us posted on how you are doing.

Thoughts and prayers for a successful and uneventful 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

pjb

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Re: WOW
« Reply #3 on: March 26, 2012, 09:00:59 am »
Thoughts and prayers will be with you and will see you on the other side...Hoping you researched your surgeons thoroughly I cannot stress that enough...

Good luck,
Diagnosed with a 1 cm. AN had Retrosigmoid
Approach surgery July of 2009, several problems after surgery.

mindyandy

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Re: WOW
« Reply #4 on: March 26, 2012, 09:06:18 am »
Hi Kaylene
Glad you found us here. This group is wonderful and full of information. I do hope you have a quick and uneventful recovery. Please keep us posted on how you are doing.

Mindy
14mm dx 9/07. CK done Seattle  1 year MRI showed some shrinkage. 4 year MRI 2mm growth nothing conclusive. Trigminal nerve involvment Retrosigmoid Friedmand/Schwartz HEI March 7,2012

jaylogs

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Re: WOW
« Reply #5 on: March 26, 2012, 11:28:11 am »
Kaylene, welcome to our little club! I am sorry you had to be here, but as you have no doubt seen that this is a great place for anything and everything AN!  We are not doctors here, just people who have walked in your shoes, so if anything comes up as you recover and feel the need to vent or whatever, just let us know.  Good luck with your surgery! 
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

Jim Scott

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Re: WOW
« Reply #6 on: March 26, 2012, 03:41:09 pm »
Hello and welcome, Kaylene ~

Of course I'm sorry you have to deal with this benign but troublesome tumor called an acoustic neuroma but I have to thank you for your generous words regarding the forums and I'm delighted to learn that our members posts have been encouraging to you. 

We do consider this a 'special' place because ANs are relatively rare and it's great to have a website chock full of information about them and, of course, the support of others dealing with the same situation. 

I want to add my wish to all the others for a successful, drama-free surgery for you Kaylene.  We'll all be looking forward to reading your first message as a 'postie' (post-surgery) but don't make that a priority.  Rest as you need to.  We'll be here for you when you're ready and able to post.   

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.

kaylene

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Re: WOW
« Reply #7 on: March 26, 2012, 03:43:58 pm »
Thanks guys, it's nice to know you are here.  Very reassuring, it helps to know that others have gone through this.

pjb we don't get to many choices in Australia with surgeons.  With the size of my tumour I was directed to the best of the best pretty quickly.  There seems to be not to many of them who do it in Melbourne.  And my surgeon, Professor Kaye has been doing them for years, training first with you guys in America.  Everyone who I speak to has heard of him and say he is the best neuro.  So that is comforting.

Mike, we are heading in to our winter so it is just starting to get chilly in Melbourne, beautiful days though.

So yes, I'll see you all on the other side as a postie.

Cheers

Kaylene
30mm AN removed March 2012
In Melbourne Australia.
I now have SSD (RS) and tinnitus.
Good recovery, not to many issues.

BeckyMax

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Re: WOW
« Reply #8 on: March 26, 2012, 08:14:57 pm »
Welcome Kaylene, sorry to meet this way, I'm a newbie too, I don't post much since I'm still getting edumacated myself, but I do sign on every day and read as, uch as i can fit in a limited amount of time.  Good luck with your upcoming surgery and keep us all posted on your recovery.

Becky
7mm x 5 mm Left AN, diagnosed 2/9/12
7mm x 6 mm  8/12
9mm x 7 mm  8/13
Cyberknife 12/13

crv1200

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Re: WOW
« Reply #9 on: March 26, 2012, 09:22:50 pm »
Welcome to the forum!  I am new also.  I am still waiting to have my MRI so not confirmed with an AN yet but I have found this site to be welcoming to everyone.  I pray you have a drama free surgery and fast recovery.


Ray

rays

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Re: WOW
« Reply #10 on: March 26, 2012, 10:39:31 pm »
Hi Kaylene,

I'm a newer member than you by a few hours. I to am grateful to have found this group. The people here are so helpful.

I'm still waiting to find out the date of my surgery, but I wanted to wish you all the best with yours.

Good luck,

A different Ray
2/17/12- Urgent Care dizzy/ringing in ear.Told sinus infection.It wasn't
2/23- ENT Doc Inconclusive.Sent to hearing test
3/8- Hearing test
3/12- ENT concerned w/test results.Sent for MRI
3/12- MRI
3/19- ENT sees AN.Sent to HEI
3/21- Dr. House recommends middle fossa
4/26- Scheduled for Surgery

Cheryl R

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Re: WOW
« Reply #11 on: March 27, 2012, 06:38:30 am »
Always a good welcome to the newbies here and not really a place where one likes to have to be.         I like to add that on here many do well and are on for a time after treatment and then get back to their usual life.    There is usually an adjustment of some kind but there is life again after AN surgery or radiation.     Not everyone has what seems like terrible problems long term.             I wish the best for everyone!            It is a scary time when one hears one has a brain tumor.
                                                                      Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

kaylene

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Re: WOW
« Reply #12 on: March 30, 2012, 07:38:05 pm »
Just a quicky. It's day 3 post and what a journey. I am pleased to report my fabulous surgeons removed all the tumor. My face has feeling. I am absolutely exhausted. I'll tell more later.
Kay
30mm AN removed March 2012
In Melbourne Australia.
I now have SSD (RS) and tinnitus.
Good recovery, not to many issues.

CHD63

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Re: WOW
« Reply #13 on: March 31, 2012, 07:11:01 am »
Good news, Kay!!!  Keep up the good work.  Rest, rest, walk, rest, rest, walk!   :)

Thoughts and prayers continue.

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

MDemisay

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Re: WOW
« Reply #14 on: March 31, 2012, 11:01:01 pm »
Kay,

Rest, rest and more rest, get some exercise( with supervision) and more rest. Prayers for your speedy recovery. You might feel light headed for a while take it easy, rest when you can,we will be here.

This can be misleading, in my view, you are not a "Newbie" anymore when you have had surgery, you are a veteran. In my honest opinion!

Rest veteran, you deserve it!

Mike

1974 - Dr. Michelson  Colombia Presbyterian removal of 3 Arterio Venous Malformations
2004- Dr. Sisti  NY Presbyterian subtotal removal of 3.1 cm AN,
2012 - June 11th Dr. Sisti Gamma Knife (easy-breasily done)"DEAD IRV" play taps!
Research, research, research then decide and trust in God's Hands!