Author Topic: New to this site  (Read 3563 times)

brayty22

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New to this site
« on: April 05, 2010, 09:59:18 pm »
Hey everyone! I am new to all of this. I am a 28 year old mother of 2. I am engaged to be married to the most wonderful man on July 31 of this year. I was diagnosed with a 2.6 cm AN about 2 weeks ago. I am scheduled for surgery on April 20th. I am so happy that I found this site because it seems that any other stories I have read on the internet have been horrible. I decided to get on here because I thought it would be helpful to speak with others going through the same thing. As far as the surgery goes, what should I expect? Ive always thought it may be better to expect the worst, but hope for the best!! That way you wont be disappointed!
Crystal

sgerrard

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Re: New to this site
« Reply #1 on: April 06, 2010, 12:48:49 am »
I think you are right, it will be helpful to speak to others going through surgery. They will be along shortly. :)

Expecting the worst so you won't be disappointed and may be pleasantly surprised is a good way to go, as long as you don't really expect the worst and get all down about it. Many times it goes pretty well, and it is certainly better than "horrible." Well, except maybe the first three days after surgery, but as we like to say around here, the first three days don't count.

Welcome to forum.

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

cindyj

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Re: New to this site
« Reply #2 on: April 06, 2010, 07:14:29 am »
Hello and welcome to the site!  Congratulations on your upcoming marriage!  With your surgery scheduled for this month, you should be quite ready for your wedding and new life to begin.  I notice you are in SC...I'm in GA, just north of Atl.  My mom lives in Greenville, SC.  Do you know which surgical approach the docs will be doing?

While sugery is no piece of cake and everyone's recovery is different, in general, you should expect about 4-6 weeks of true down time...most people who work are able to return to work within that timeframe - some part time at first.  You should be able to return to driving within about 4 weeks, some start much sooner ;)  As Steve notes, the first three days post-op "do not count."   There are many, many of us here who are doing very well post-op - I think you should be prepared for some change, but be optimistic that all will go very well for you!

Please keep us posted,

Cindy
rt side 1.5 cm - Translab on 11/07/08 Dr. Friedman & Dr. Schwartz of House Ear Institute,
feeling great!

"Life consists not in holding good cards, but in playing well those you do hold."  Josh Billings

brayty22

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Re: New to this site
« Reply #3 on: April 06, 2010, 07:44:06 am »
Thank you guys so much for the feedback. I dont know the exact name of the surgical approach they will be using but I know it is like a "stretched out S shape" behind the ear.
The big thing for me is that my children, they are 4 and 7, will be going to their dads until I can take care of them on my own again. I didnt know how long that would be. They are not used to being away from me for too long so it will be somewhat of an adjustment for them also.  I think Im more worried about them than myself.. lol I guess thats a typical mom thing. 
      Crystal
Crystal

tenai98

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Re: New to this site
« Reply #4 on: April 06, 2010, 07:55:03 am »
Hi Crystal
And welcome to the forum. BTW, you're getting married on the same day as my son!!
I had my surgery this time last yr. If you keep reading on this site, you will find a variety of recoveries...We are all unique but yet all the same ;D  take each day as it comes, rest and nap when you can, and before you know it, your little ones will be back with you in no time...
JO
14mmX11mmX11mm left ear
TRANSLAB 04/07/09 2cms at time of surgery
Dr. Benoit and Schramm, Ottawa Civic Campus
SSD ,some facial numbness
Baha surgery sept 22/09
residual tumor 13mmX7mmX8mm
2016 new growth.  25mmX21mmX22mm
cyberknife on June 7

CHD63

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Re: New to this site
« Reply #5 on: April 06, 2010, 08:26:41 am »
Welcome to this forum, Crystal.  And congratulations on your upcoming marriage.  So sorry you popped up with an AN right now.  As the others have said, you are young and healthy and should do well following surgery.  My surgery was two years ago at Duke Raleigh Hospital.  I am much older than you are and I did very well by two weeks post-op.

Your 7-year-old probably will be in school still (unless you are home-schooling) so if your 4-year-old is quite self-entertaining, you very likely will be able to resume their care a month to six weeks post-op (with help available, if needed).  This is assuming you have an uneventful recovery.

Don't read any more of the horrible stories.  I am also one of those "expect the worst and be ecstatic when the best happens" kind of people but this is one of those times when you really want to go into surgery as calm and at peace as possible.

Vent to us and share your concerns, ask your questions, etc.  We understand!

Best thoughts and prayers.

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

Jim Scott

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Re: New to this site
« Reply #6 on: April 06, 2010, 01:26:46 pm »
Hi Crystal - and welcome to the ANA website forums.

Granted, the timing of your AN diagnosis is unfortunate but you seem to be well grounded and not allowing the 'what if's' to get to you.  Smart.  Your 'expect the worst - hope for the best' philosophy is sound and will help you as you move toward the surgery on April 20th.  AN removal surgery definitely has it's risks but many AN surgery patients do quite well with few complications.  I'm one of those - and I was 35 years older than you are now when I had my surgery.  Some of our younger, more active AN surgery veterans are running marathons and other pretty demanding activities within a few months of their surgery, so getting married 3 months after your surgery should be easy.  Incidentally, any information you can offer on your doctor, hospital, etc would be welcome.

Your avatar photo is charming!  I'm sure you and your fiancé will have a wonderful life together and your kids will get through your hospitalization and initial recovery period (a few weeks) just fine.  Now, please stop reading those AN 'horror stories' on other sites and make this site your 'home', because you're among friends here...people who've been where you are and understand your concerns.  We're ready and willing to offer factual information, advice (when asked) and our wholehearted support as you travel this road.

We have an online 'AN Treatment calendar' that lists procedures and important days of our members.  I've taken the liberty of adding your name to it: http://my.calendars.net/an_treatments/d20/04/2010?authenticate=&display=M&style=B  Please feel free to add more information, if you wish.  :)

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.

ksiwek

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Re: New to this site
« Reply #7 on: April 06, 2010, 02:23:09 pm »
Hi Crystal!

So sorry to hear your news!  I too just found out about my AN...about a month ago.  I am 29 and getting ready to have our first baby.  I will be praying hard for you and your speedy recovery!  I can feel that you will do beautifully and will be my inspiration for when I have my turn for surgery in July.  If you ever want to talk, send me a message and we can connect.  Likely, we are working through many of the same emotions right now and the most helpful thing I am finding is to talk to people who have been through it...we are the only ones who really 'get it'.  May you have a beautiful and happy wedding!
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)

james e

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  • 72 years, 1.7cm, trans lab Mar 2010, BAHA 5
Re: New to this site
« Reply #8 on: April 07, 2010, 02:53:49 pm »
You are just the kind of person I want to spread the good news to. I was "discovered" in December '09, and went through months of trying to decide how to handle my case. I am a 60 year old man. I decided to have the translab surgery which is the S shape behind the ear. You will loose your hearing in that ear. I read ALL of the stuff you have read, seen ALL of the you-tube stuff you have seen, and heard ALL the same stuff you have heard. I just had my surgery March 24th, and it was not that bad.

Little back ground here. Had a stroke in April '09 caused by a hole in my heart and had a PFO closure surgery on my heart in May '09 to close the hole. Sound sick, right! Before the stroke I was getting dizzy all the time, and just guessed the heart problem was causing me to have TAs. After the stroke and surgery, my dizzy spells quit so I figured I was cured. I am in excellent physical health, lift weights every day, blood chemistry is perfect, eat the right foods, etc. I am not a sick man! December '09 I start getting dizzy again, think I'm having another stroke. I get an MRI, and they find the AN. That is how I got here, and now you are here.

I went into surgery at 7:30 in the morning and came out at 5:30 in the afternoon. I threw up twice in the recovery room, and that is when I found out that my facial muscles were in good working condition...good news! This is a real key in my recovery...look for the good stuff. My wife got to see me right after they cleaned me up...good stuff. They kept me drugged up so there was no pain...good stuff. They gave me a bath in the morning...good stuff. Full breakfast of pancakes, sausage, juice, biscuit, milk and coffee...good stuff. My wife came in...couldn't get any better. Physical therapy came in, tied me up with a canvas belt and took me for a walk. Now she made me mad because she thought I was walking too slow, but this was just 12 hours after I got out of surgery...but it was good stuff. By noon I was in my regular room...good stuff.

 I told my wife and daughter not to hang out at the hospital because I did not want to talk to anyone. I just wanted to rest. I got bored. So I set some goals for myself. The doctor said I could go home when I can walk by myself, and keep food down. I went on several walks. 3 doors down the hall and back in bed. 10 doors, in bed. Walk without a holding onto the hand rail. Order some food. Now my surgery was Wednesday, and on Friday, the doctor said I can go home Saturday morning...good stuff.

The worst part was not pain. At first, I thought I was in pain, but looking back, I was just really uncomfortable. Blood pressure cuff on too tight, could hear my heart in my left ear, by bottom is sore, my right toe itches, my mouth is pasty, I want to brush my teeth, I want to sit up, now I want to lie down...bad stuff. This is not a day at the beach, but no pain.

Tomorrow is 2 weeks post. I lost about 10 pounds, but I am gaining it back. I cannot lift over 10 pounds for another 2 weeks. I got the stitches out yesterday. I started wearing my glasses 5 days after surgery, but my vision is a little fuzzy. I spent the first two days back home in bed, getting up to walk a little and use the rest room. I did not have a BM for 7 days...not good stuff. Used an enema...good stuff. Now I am up all day long, reading, TV, etc. Later in the afternoon I get tired, just like someone turned off my switch, so I take a nap.

My out come has been great, but you asked about the surgery, so that is what I wanted to comment about. Get yourself in a "I'm ready to do this" mood. Look forward to ALL of the good that is going to happen to you, and I mean even enjoy the small stuff. I have been all over the world, and seen people drinking dirty water, eating out of trash cans...worst of the worst. Every day, I get a clean glass of water and drink it, and think how lucky I am, for a glass of clean water...good stuff.

Excellent physical health is a big PLUS...good stuff. Over weight can cause problems...bad stuff. Positive attitude can actually make this a good experience...good stuff.