Author Topic: Was it really two years ago?  (Read 3271 times)

Obita

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Was it really two years ago?
« on: May 12, 2006, 08:24:14 pm »
Hi everyone:

I have decided to post my story on the eve of my two year anniversary.  I was a little hesitant to post it as I had very few complications.  Dale,  your "don't hate me" post convinced me it was the right thing to do.  People that are considering or have decided to have surgery should hear how well it can go.

I was diagnosed with a 2.5cm neuroma on the left side.  The tumor had not started compressing my brain stem but it was touching it.  After many hours of research and three dr. visits I decided on surgery via translab.  I wanted the tumor GONE and my facial nerve intact if at all possible.  I was willing to sacrifice what hearing I had to do this.

Thursday, May 13, 2004 finally arrived and I was at the University of Minnesota by 4:30 am.  I was not nervous at all.  The three months between diagnosis and surgery was not fun but that morning I was ready to get on with it.  My two Doctors came in to say hi - they explained again what they were going to do - they liked my haircut (I keep it pretty short anyway but for surgery I had my hairdresser shave the back) - they asked if I had anymore questions and off to the OR I went.

My surgery took 8.5 hours.  The only reason it took that long was because I have a high jugular bulb.  I guess they have to go up and over it instead of straight through.

When I woke up I answered all the usual questions they ask to make sure there is no brain damage, what is your name, who is the president etc...I was very much awake.  They asked my what my brother's phone # is and my sister didn't think I could answer so she started telling the nurse his number.  I stuck my tongue out at my sister because I was very capable of telling the nurse his number.........My sister said:  "She is just fine!  I am going home!"

I spent the first night in ICU and I went to my own room the next am.  My first visitors were my Doctors.  My first question to them:  Did you get it all?  "we think so but you never know".  Just hearing we think so was good enough for me.  They asked me to smile and said my smile looked pretty good.......a little droop but not too bad.  They wouldn't let me eat solid food until dinner friday.  I was so hungry........only a little jello and broth before then.  Dinner was some kind of hotdish with tomatoes.  I told the nurse that was the crappiest hotdish I had ever eaten.  She said she ate it and thought it was good.  Well,  breakfast the next day tasted the same as the hotdish.  I had forgotten I would loose my taste!!  Then I was a wee bit bummed out.  I could get a little flavor if I shoved the food way up on the right side of my mouth. 

Saturday I started walking out of my room.  (Friday was just to the bathroom and back to bed with help)  First it was walking with a nurse on one side and the railing on the other.  By saturday night I was walking all around the floor by myself.  I was "off" but not dizzy.  As long as I stayed by a wall I felt secure.

Sunday AM my doctor came in and asked if I felt like going home!!  I couldn't believe it.  I must admit I was a little afraid - go home already?  They had told me five to seven days..........He said I could go if someone stayed with me for another 48 hours but I had to come back tues. to get the bandage off.   Right then my sister walked in for a visit so I asked her if she could stay with me for a few days.  She was as shocked as I was.  Within a hour I was out walking to the parking ramp.  We went through the tunnel which has railings.  I walked and tapped the railing every few feet for security.  I WAS OUT IN 72 HOURS!!

Being home was wonderful.  My brother brought my dog back home and life was good.  I was deaf in my left ear, I would soon have terrible muscle spasms in my neck due to the position my neck was in for 8.5 hours, the HUGE pressure bandage was a pain in the butt, I couldn't drink out of a pop can without making a huge mess, my eye dried up and I scratched my cornea a bit,  off to the eye dr. for a patch and food tasted like crap but no headaches.

Two months later I was back at work,  eye was fine and closing all the way again, taste was getting much better, the pop can thing was better,  my hair had grown back and covered my scar and my dr. said: see you in a year.

One year:  MRI showed no regrowth - taste was back to normal except for bananas tasted like crap.

Two year:  MRI showed no regrowth - bananas still taste like crap - another MRI in a year.

So, other than being deaf in one ear and the banana thing (I really did like bananas) I think I came out of it about as good as you can. 

Thats my story,  Kathy O'Brien


Kathy - Age 54
2.5 cm translab May '04
University of Minnesota - Minneapolis
Dr. Sam Levine - Dr. Stephen Haines

cookiesecond

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Re: Was it really two years ago?
« Reply #1 on: May 12, 2006, 08:37:18 pm »
Kathy,
Thank you so much for sharing your great story.I am very happy for you and we all need to hear the GOOD stuff.
Thanks again,
Lynn

Obita

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Re: Was it really two years ago?
« Reply #2 on: May 12, 2006, 08:50:59 pm »
PS:  I forgot to mention the most important thing re:  Surgery - If you do decide to have your tumor removed your surgeon must have many of these surgeries under his/her belt for the best outcome.  My Drs. had done over 500 when I had it done.  Kathy
Kathy - Age 54
2.5 cm translab May '04
University of Minnesota - Minneapolis
Dr. Sam Levine - Dr. Stephen Haines

Battyp

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Re: Was it really two years ago?
« Reply #3 on: May 12, 2006, 09:35:46 pm »
Kathy what an inspiration! 
It's always nice to hear how great one can do after surgery!  Especially those who was in the beginning stages of making a decision or just being diagnosed!

Thanks for sharing and hope those bananas start tasting good again soon!

Road Trip Dale

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Re: Was it really two years ago?
« Reply #4 on: May 13, 2006, 10:18:42 am »
Thanks for the story and mentioning me at the start.  I haven't told my story in depth because there really hasn't been much too tell.  It pretty much has followed the same lines that your story followed.  For me the big break through was when they took out the Foley Catheter (spelling may be wrong), and they unhooked me from my tether (IV) so that I could get up and move around and go to the big boys room by myself.  They wanted me walking so my DW Carol made sure I got down the aisles and back.  My surgery took 5 1/2 hours, 3 1/2 of which took drilling through my thick skull.

Great to hear your story.  It makes me feel good to know that there are many good stories out there.  I have felt so great, with almost no side effects that, like you, I have felt hesitant about saying some of this stuff.  But I'm so gregarious that I can't help myself.

You keep up the good work and stay in touch. 

Dale
1.75 AN Right Side
Translab 4/16/06
Dr. Charles Leutje and Dr. Paul Camarata
St Luke's, Kansas City, MO

thecakes

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Re: Was it really two years ago?
« Reply #5 on: May 13, 2006, 04:14:40 pm »
   Good for you girl!  I loved that story.  Thats nice to hear that all went so well for you.  When others read these posts, I hope they remember that everyones operation and tumor is different.  So many of us have some commplications and I've had a plenty,but there are good stories too and I bet alot of these stories don't get told because these people aare well and have moved on with there lives and they don't get on this website.

matti

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Re: Was it really two years ago?
« Reply #6 on: May 13, 2006, 08:09:42 pm »
Thank you for posting your AN journey.  I think most of my pain after sugery came from the darn bandage around my head. It was soooo tight. As soon as it was removed, I felt 100% better.

WOW! out in 72 hours must be the record. You are amazing!!

As long as you can still taste and enjoy Chocolate is the important thing. We can live without bananas, but not chocolate.  ;D

Cheryl





3.5 cm  - left side  Single sided deafness 
Middle Fossa Approach - California Ear Institute at Stanford - July 1998
Dr. Joseph Roberson and Dr. Gary Steinberg
Life is great at 50

Obita

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Re: Was it really two years ago?
« Reply #7 on: May 14, 2006, 07:04:24 am »
Thank you all for your kind words.....I know I am one of the lucky ones re:  AN surgery - Since surgery in May 2004 I have had both hips replaced and a hysterectomy (actually I had the other three surgeries within 350 days of the AN).  The AN put my hip surgeries on hold until Aug and Oct 2004.  I am lucky also to have a employer who understands "stuff happens" because I was out 7 of 12 months that year...so AN lucky I am but I have had my share of other crap too.

Dale,  where will you be in Northern Iowa?  I am only 90 miles from the Iowa border.  I needed something to do while out on leave(s) so I started working on my family tree.  I am hooked and am planning a trip to Ireland next year.  I can drive down anytime (maybe bring Denise S. with me.  She and I only live 40 miles apart so we are going to try and meet in the next few weeks).

You are right Cheryl.  Chocolate is much more important than bananas.  I do enjoy my chocolate now but the first two months after surgery it tasted very bad.

It is 45 degrees in Minnesota today.............Kathy

Kathy - Age 54
2.5 cm translab May '04
University of Minnesota - Minneapolis
Dr. Sam Levine - Dr. Stephen Haines

Lisa Peele

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Re: Was it really two years ago?
« Reply #8 on: May 14, 2006, 08:19:25 am »
Kathy and Dale...I'm so glad you posted...happy to see how well you've done...and happy to see the positive response and support from other board members. 

Regardless of outcome, we've all been through many of the same things (from the shock of diagnosis, to planning treatment strategies, to laying in bed at night thinking about what our future will hold).  AN patients range from children to the elderly, men and women, dads, moms, kids, brothers and sisters.  We come from different circumstances, and have a variety of issues that make each situation unique...but we are brought together because we are all somehow affected by Acoustic Neuroma.

I visit the board almost daily (I've been on since it was started) and contact people directly alot, but I do not post often.  I know there are many here who deal daily with after-effects from treatment, and I feel terrible about that.  It's wonderful that there is a such a strong support network from this board and other internet sites! 

It's been nearly two years for me, too.  I can't seem to pull myself away from this website, even though I have recovered completely.  My tumor was large, but my surgery was short (3 1/2 hours) and my recovery was uneventful.  It all happened so quickly for me.  I was diagnosed, had the tumor removed, and resumed LIFE--as I have always known it--within a period of about a month.  Of course, I am forever changed by my experience...but only in the best of ways.  Please check my previous posts for more detail on my own story if you are interested.

I'm sending good wishes to all of you and hope that you will find peace and light in your world and in what means most to you!   

(For all the moms out there:  Happy Mother's Day! :D)
Lisa Peele, 38
Dublin, OH
4.3 cm X 3.3 cm (right)
Translab.
House Ear Clinic (Friedman and Hitselberger)
June 14, 2004

DeniseSmith

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Re: Was it really two years ago?
« Reply #9 on: May 15, 2006, 12:12:22 pm »
Kathy,

I am so very happy your AN journey has been and continues to be much better than mine!! Really, I do.    I think the success stories or should I call them the stories of short recoveries are very inspiring, even for me. 

Denise 8)

P.S. My new puppy is great.  She seems to be very comfortable with us in a very short time.  I love her!!!! Our other Chihuahua is alittle jealous, but I think overall she likes her.  They already play together and are funny to watch.

Captain Deb

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Re: Was it really two years ago?
« Reply #10 on: May 15, 2006, 06:33:55 pm »
I really like hearing from you folk who are "success stories" as well as folk who are still struggling.  It's important to hear from the whole range of outcomes, particularly for the recently diagnosed.  I had my surgery 3 1/2 years ago--did a lot of posting before and right after--had unbelievable headaches for 2 years--quit posting--headaches went away for the most part --and here I am back again.  I have to believe there to be a reason for all this disruption in my already planned-out life! I think I'm supposed to be helping the next person on the path and to let people know ther IS life after AN and that we are survivors, not victims, although feeling like a victim is a pretty normal thing--one can get past it and get on with living a good useful life!

I feel like my life is great right now--a little limited, but great. I try to focus on what I CAN do, not what I used to be able to do or what I can't do now. My motto is "Give time time."
(It's also "Fight for your Balance!")

Best wishes,
Capt Deb 8)
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
Captain & Designated Driver of the PBW