Author Topic: I thought i was a klutz  (Read 6257 times)

amylynn

  • Jr. Member
  • **
  • Posts: 70
I thought i was a klutz
« on: August 22, 2006, 01:36:46 pm »
hi everyone!
just got my diagnosis.  am auomatically checking with mayo clinic.  have a 2cmx1.5cmx2cm on nerve, left ear hearing loss and dizziness. dont really know where to begin. any suggestions?  I ignored my symptoms just assuming i had been to too many loud concerts and on too many noisy firetrucks. I am 35 and a mom and wife.  I am afirefighter and love it, am i gonna be able to keep doing my job?  Thanks to all of you for your support.  It is easy now to see all i have taken for granted.  just want to enjoy life, my daughter, husband and family.  I think im still in shock. 
 

« Last Edit: August 26, 2006, 02:50:48 am by amylynn »
amylynn 
3.0cm AN left
sx 10/26/06
House-Friedman/Hitselberger/translab
35
MO

tatianne

  • Full Member
  • ***
  • Posts: 226
Re: I thought i was a klutz
« Reply #1 on: August 22, 2006, 02:11:14 pm »
welcome amylynn, who have come to the right place for support, friendship and lots of helpful information.
Im also newly diagnosed, and currently "waiting and watching".
Your AN, is it 2mm or 2cm ??
I can definitly understand that you are having difficulties figuring out where to begin, i think im still having problems with that.
Being new at all this i dont have a lot of advice to offer but if you ever need to talk, PM me anytime.
T
Waith and Watcher
July 2006 8mm
Jan 2007 9.5 mm
Jan 2009 1.4 cmm x 5mm
GK surgery completed on May 4, 2009 in Sherbrook Quebec, hoping and praying this will be the beginning of the end of my AN......

amymeri

  • Sr. Member
  • ****
  • Posts: 308
Re: I thought i was a klutz
« Reply #2 on: August 22, 2006, 02:17:34 pm »
Consider, too, getting an opinion from the House Clinic in L.A.  They do phone consults once they get copies of the MRI and are the national leaders in AN diagnosis and treatment.

You have come to a great place for support...we're all in the same boat (and as you will learn, some people are partying on the high seas all the time-->the pirates are swarming here, as you will learn!)

Amy

4cm AN removed 4/13/06
Amy

4 cm right AN removed restrosigmoid 4/13/06
Partial facial paralysis, SSD and trigeminal numbness for now

Cheryl R

  • Hero Member
  • *****
  • Posts: 1824
Re: I thought i was a klutz
« Reply #3 on: August 22, 2006, 03:03:51 pm »
Are you from the midwest?       The university of Iowa has a very good neurotologist Bruce Gantz, who does AN's also.     They do not do radiation though and would have to go elsewhere if want info on that route.
Good luck on your AN journey!                             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

Captain Deb

  • Hero Member
  • *****
  • Posts: 3316
  • Phearless Phyll and Captain Deb!
    • Captain Deb
Re: I thought i was a klutz
« Reply #4 on: August 22, 2006, 04:00:30 pm »
Welcome to the forum, amylynn. Believe me you aren't the only klutz around here! We have Wonkyheads and Dizzy Divas as well. If you are symptomatic I'm assuming your AN is 2 cm?  The treatment options for tumors your size vary,so I suggest a post or two in the "pre-treatment options" area.  The ANA website has a lot of great information, as well and they will send you literature. Remember, for the most part that these lil buggers are slow growing so you have time to research your options.
Also under the welcome message are a few posts about how to navigate this site (still being worked on)and set up a profile for yourself that we can view so we can be of more help to you as you embark on your AN journey.

Alot of us have been through treatment already,(posties), but there are quite a few in your same situation of making important decisions.

Welcome aboard!
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

Battyp

  • Hero Member
  • *****
  • Posts: 2361
Re: I thought i was a klutz
« Reply #5 on: August 22, 2006, 04:23:44 pm »
Hi Amylynn and welcome.  Please keep in mind everyone is different in their outcomes.  It's hard for us to say how things will be and hard for the doctors to predict how your outcome will be.  Just remember to go with your gut!  What part of the country are you located? 

Michelle

Gennysmom

  • Hero Member
  • *****
  • Posts: 1070
  • Genny says "La!"
Re: I thought i was a klutz
« Reply #6 on: August 22, 2006, 08:38:08 pm »
Amylynn,

My co-worker and fellow AN microsurgery survivor is a firefighter, and he had to be off for 6 months because of the jobs physical requirements, but he's been back for 3 years and fine.  His came out retrosig and was 2.5-2.8 cm.  Albeit everyone is different, and has different outcomes, but I wouldn't worry about the job yet.

Kathleen
3.1cm x 2.0cm x 2.1cm rt AN Translab 7/5/06
CSF leak 7/17/06 fixed by 8 day lumbar drain
Dr. Backous, Virgina Mason Seattle
12/26/07 started wearing TransEar

Sue

  • Hero Member
  • *****
  • Posts: 1934
  • Que sera, sera
    • My Blog
Re: I thought i was a klutz
« Reply #7 on: August 23, 2006, 12:02:20 am »
Hi Amylynn and welcome to the ANA forum.

Yes, you are probably still in shock and will be for awhile.  It's been nearly 6 months since I found out about my AN and I still, some days, can't believe this has happened to me. On the other hand, I am delighted to finally know what was causing the symptoms that I'd had for over a year. You wil probably go through the 5 stages of grief, just as you would with any major catastrophe in your life.  Denial, Anger, Bargaining, Depression and Acceptance (not to be confused with resignation...that's different!)  Denial is the feeling that they must have gotten my MRI mixed up with somebody elses.  This isn't me they are talking about!!  Anger is the overwhelming desire to rage at the heavens for letting this happen to you. It's the sickening feeling you get in the pit of your stomach when you remember what you have and there is nothing that will change that.  I visit Anger alot!!  Bargaining...well, if I follow doctors orders and do everything right, then it will all just go away.  Depression can be pretty awful. Sleeping a lot, emotionally detaching yourself from you life, your family, your soul. Stewing in your own juice, so to speak.  Then finally, finally....acceptance. Okay, I have an AN, doctors will help me deal with it one way or another, and life goes on..with me enjoying every single aspect of it.  You don't have to go through this alone. You can talk to the people here about your problems, your feelings and believe me there are some pretty awesome people on this site.  I always tell people, this isn't the worse that can happen, but it might be the worst thing that has happened to you so far...so acknowledge your feelings about that. There is always somebody worse off than you, but you have every right to be stunned, shocked, angry, and confused with this diagnosis. And if you were like me, you'd never even HEARD of this thing before they said you  had one.  But you don't have to stay that way...people will help you through it.  We are glad you found this site.  It's a wonderful port in the storm.

Sue in Vancouver
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


The only good tumor be a dead tumor. Which it's becoming. Necrosis!
Poet Lorry-ate of Goode

kat

  • Full Member
  • ***
  • Posts: 138
Re: I thought i was a klutz
« Reply #8 on: August 23, 2006, 05:08:15 am »
Dear Amylynn

I am sorry that you have had to join this club but rest assured this is the best place to find out all treatments warts and all .
Your AN is pretty much the same size as mine 2.2 cm which luckily means that you have several options for treatment . I chose
GK in Sheffield here in UK and it is now 14 months after my zap and I am feeling fine  just getting on with life as usual .I will have my next MRI in December . I do remember the day of my diagnosis well my Ent specialist had reassured me that the An is slow growing and there is no immediate panic to rush into any treatment  . I walked out in a daze and for the rest of the day carried on
as usual .The next day a leaflet arrived explaining the condition and it was then that I went to pieces I have a  BRAINTUMOUR !!!
My husband comforted me the best he could and then he spent the best part of the day on the internet doing research and finding out about all the treatments and he reassured me that this was far from the death sentence I had first feared. I then spent a lot more time doing research myself and then decided that GK was the treatment for me . I was not easy to be referred but in the end I got there and so far I have felt fine and enjoyed life doing all the things that I used to . Sometimes I think that it has all been far too easy and painless to have worked  but time will tell . I am lucky to have very few symptoms only tinnitus and hearing loss on the AN side and  no dizziness as yet . There is life after AN ! Do not panic just take your time to do your research since only you can decide what treatment will suit you and your life style .  I admire you so for being a wife , mother and a firefighter Wow ! What a juggling act that must be .

Very best regards Katarina

 

2.2 cm AN diagnosed July 2004 . GK at  the Royal Hallamshire
Sheffield UK in April 2005 2nd MRI in December 06 showed signs of the AN shrinking and MRI in FEB 08 showed no change . SO FAR SO GOOD .

Kilroy1976

  • Full Member
  • ***
  • Posts: 197
Re: I thought i was a klutz
« Reply #9 on: August 23, 2006, 06:21:17 am »
Welcome AmyLynn.

Getting started is usually the hardest part, and if Mayo is convenient to you that seems like a pretty good place to get a start. It's almost always a good idea to talk to multiple doctors. If they agree, it's reassuring, and if they disagree, it gives you options to weigh.

There should be no reason that you won't be able to enjoy life and your family. As for firefighting... you'll probably know better than anyone if you can do your job. You'll learn your limitations pretty quickly and will be able to make a decision like that.
1.8cm AN
Linac
December 13, 2005
Shands Hospital--University of Florida

krbonner

  • Hero Member
  • *****
  • Posts: 700
  • www.facebook.com/krbonner, bunnums on Twitter
Re: I thought i was a klutz
« Reply #10 on: August 23, 2006, 07:00:34 am »
hi everyone!
just got my diagnosis.  am auomatically checking with mayo clinic.  have a 2x2cm on nerve, left ear hearing loss and dizziness. dont really know where to begin. any suggestions?  I ignored my symptoms just assuming i had been to too many loud concerts and on too many noisy firetrucks. I am 35 and a mom and wife.  I am afirefighter and love it, am i gonna be able to keep doing my job?  Thanks to all of you for your support.  It is easy now to see all i have taken for granted.  just want to enjoy life, my daughter, husband and family.  I think im still in shock.   

Your situation sounds so similar to mine!  I'm 35, also, with two young sons.  I was diagnosed last year after a sudden onset of symptoms during my second pregnancy.  I, apparently, am "blessed" with a fast(ish)-growing AN so I've scheduled surgery for this fall (after many consults with many types of docs).  As others have said, you can get a free phone consult from House Ear Clinic in LA.  Even if you don't want to travel, it's good to hear lots of opinions.  When I did that, every single doc I talked to (including the radiologists) said I needed this surgery.  Fortunately, I live near the medical-mecca of Boston so I could find a surgeon I feel confident in and who's done hundreds and hundreds of these surgeries.  For me, the key was finding someone who thought ANs were an every day occurance!  You know that person's got tons of experience.

Anyhoo...

I'm so sorry you have to join this motley crew, but you'll never find a more compassionate, supportive, understanding, fun-loving community.  As somderfully supportive as my family and friends are IRL, they simply can't have the same level of understanding that the people here have.

Keep posting!

Katie
diagnosed June 2005
2.3cmx1.6cmx1.4cm left AN
translab Sept 13, 2006; Drs. McKenna and Barker in MA (MEEI/MGH)

ppearl214

  • Administrator
  • Hero Member
  • *****
  • Posts: 7449
  • ANA Forum Policewoman - PBW Cursed Cruise Director
Re: I thought i was a klutz
« Reply #11 on: August 23, 2006, 07:32:01 am »
Hi AmyLynn,

Well, as you can see, the welcome mat is out and we truly are here to help.  Many here have already posted wonderful suggestions as you begin this AN journey, so know that there are a great many soft shoulders (trust me, I've broken in quite a few!) here, as well as geniune souls with great tips, advice, feedback and hugs if need be.  Many of us have journaled (publically) in the "PreTreatment" forum, so you can see how many have taken on the decision making process (including the fears, discoveries, etc).  The other forums really are helpful in learning more about the options available to you (watch/wait, micro-surgery, radio-surgery).  I know much of it will feel overwhelming to you but know, we are all here to help you with any and all questions you have and will answer as best as we can.

So, please remember, you are not alone.  This is one heck of a ride BUT this is a ride that can go smoothly and we're here to help with any bumps in the road that may turn up.

Hang in there!... and most of all... welcome!
Phyllis
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

pattibobatti

  • Full Member
  • ***
  • Posts: 184
Re: I thought i was a klutz
« Reply #12 on: August 23, 2006, 09:19:53 am »
Hi Amylynn,

I bet you ARE in shock!  So sorry you have to be going through this.  I found this website a few months after my surgery.  I did not have all this knoweldge available from this website when I was diagnosed.  You are in a better position than I was.  I hope you have lots of time to read these posts and become well informed...

And you will find all the people here very helpful...So ask away!!! 

God bless you as you start this journey.  You will be fine...

Pattibobatti









17 mm AN removed 1-16-06
  retrosigmoid
  paralysis, cornea transplant,avascular necrosis

   'Are we having fun yet?'

amylynn

  • Jr. Member
  • **
  • Posts: 70
Re: I thought i was a klutz
« Reply #13 on: August 26, 2006, 03:07:54 am »
My whole- hearted thanks to all of you with so much valuable information and such kind words.  i am already feeling better as i have a tentative date for surgery, just trying to get through insurance loopholes. 
I hope you all know what a Godsend you have all been.  I would be lost without this website.  You are all very strong people.
                                                     Sincerely,
                                                                   Amylynn 
amylynn 
3.0cm AN left
sx 10/26/06
House-Friedman/Hitselberger/translab
35
MO

sherry2626

  • New Member
  • *
  • Posts: 7
  • Life Is Good
Re: I thought i was a klutz
« Reply #14 on: August 26, 2006, 11:26:58 am »
Amylynn......My heart goes out to you I was also just diagnosed July 30th...It has been a rough month.....But I wish you all the best I will keep you in my prayers...Good luck!!!

Sherry
Diagnosed July 30th 2006
AN Left Side 1cm Length
35% Hearing Loss
Wait & Watch