Author Topic: How fortunate are we  (Read 5056 times)

konnie

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How fortunate are we
« on: October 30, 2008, 04:13:27 pm »


I have been thinking about this for quite a while.
 How fortunate AN patients  are compared to other type of brain tumor patients.
i had come across two co workers this mounth that are and where less fortunate then I was. The first lady is in her 60's and found out she had
a tumer however her is cancerious and had it removed and is going threw chemo. with alot  worse side effects. the second person was my maniger she was in her mid 50's and totaly healthy.  one day she did not show up for work. this was not like her,so they called. she never called back. so they did a wellness check and found her pastaway on her sofa with her eye-pode.
they found out she had a brain tumor and caused a brain aneurysm.  this is to close to home for me and they are and where great people .
No there is nothing in the water where i work, they happen to be at two different locations. but around the same time as mine.
I sometimes feel, Why them not me .  I also feel very fortunate that i did catch my tumor  when i did. my tumor was already quite large
4.5 cm and pressing on the brain stem.   
I have a greater appreciation for life and I am thankful for each day I have Like my doctor said You get a second chance....
its horable going threw it but when all is said and done and you look back at your jurney you come out a better person.
konnie
AN 4.0cm @ time MRI (7-28-08)
Surgery 8-6-08 @Hinsdale,IL by
 Dr.Wiet/Dr. Kazan
Symtoms: sinus infection,numbness on leftside of face, hearing loss left ear & morning headaches

Syl

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Re: How fortunate are we
« Reply #1 on: October 30, 2008, 05:03:34 pm »
Konnie,

We must never forget to count our blessings.

Syl
1.5cm AN rt side; Retrosig June 16, 2008; preserved facial and hearing nerves;
FINALLY FREE OF CHRONIC HEADACHES 4.5 years post-op!!!!!!!
Drs. Kato, Blumenfeld, and Cheung.

lori67

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Re: How fortunate are we
« Reply #2 on: October 30, 2008, 08:38:34 pm »
Konnie,

You are exactly right.  When you think you've got it bad, you can look around you and always find someone who's going through a lot more.

I've seen a lot of people go through some incredibly difficult struggles and I realize that my struggles are minor in comparison.

Lori
Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

Kaybo

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Re: How fortunate are we
« Reply #3 on: October 30, 2008, 09:25:02 pm »
Konnie~
I agree with Lori - you are right and I think we need to stop & acknowledge (I never know how to spell that word) that every once in a while!!  Thanks for reminding me!

K
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

leapyrtwins

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Re: How fortunate are we
« Reply #4 on: October 30, 2008, 09:38:01 pm »
Konnie -

I couldn't have said it any better myself.

As shocking and scary as my AN diagnosis was, it could have been a whole lot worse. 

I try to remember on a daily basis just how lucky I am.

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

wendysig

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Re: How fortunate are we
« Reply #5 on: October 31, 2008, 01:58:49 am »
Konnie,
Counting my llessings is something that I do on an almost daily baasis.  Things could have definitely gone worse for me an dalthough the AN journey is not an easy one it has given me the gift of remembering  to be more thankful for the little things in life and is a constant reminder not to sweat the small stuff.  There are so many people out there with worse problems than me.  It has also taught me once again that a sense of humor canhelp you get through just about anything.good   Laughter is good for the heart, sourl, body and mind.

K - You did spell acknowlede right! ;D

Wendy
1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!

MAlegant

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Re: How fortunate are we
« Reply #6 on: November 01, 2008, 09:19:31 am »
Konnie,
You are so right!  I try to remember this when I get to feeling sorry for myself (still dealing with after effects).
Marci
3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.

Jim Scott

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Re: How fortunate are we
« Reply #7 on: November 01, 2008, 03:01:20 pm »
Konnie:

I think many of us are acutely aware of how fortunate we are in relation to others with more serious medical problems.  My brother-in-law died of brain cancer a few years ago.  It was a slow, agonizingly difficult process; he literally lost the ability to speak, write or, in the final stages, even move his hand.  He died at home, by his request, with his wife, my sister, at his side.  They lived quite a few states away and I only learned of this from her letters and calls.  She avoids talking about it now and stays busy with managing an apartment house in Manhattan that she inherited from her husband and traveling a lot.

When I first received my AN diagnosis I immediately thought of my brother-in-law and his horrific decline and demise but after a few hours I had reassured myself, via internet research, that what I had was a benign tumor that would not kill me if it was addressed, just as my doctor had stated when he gave me the diagnosis.  Since then, I've successfully undergone surgery and radiation and enjoyed a splendid recovery - for which I'm eternally grateful.  I know other AN patients have not been as fortunate and I pray for them, daily.  I also realize that while we can be grateful for not being worse off (having a cancer diagnosis, for instance), pain is pain and whether it be facial paralysis, excruciating headaches or any of the other AN-related issues so many have to deal with, while you're going through it, knowing others have worse problems does not always bring solace.  Still, this thread proves that most of us are grateful and have gained a new perspective on life and its vicissitudes.  I'm one of them.

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.

konnie

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Re: How fortunate are we
« Reply #8 on: November 01, 2008, 04:03:14 pm »
jim 
 how have you been nice to hear from you again....

I'm sorry to hear about your brother-in-law, it must have been a hard time for you and your family.... Any kind of brain tumor is scary.
even worse when it is cancerous...
 
 you are correct about having this forum to go to when ever you have a question or just need to vent.
I truley believe it helps with the recovery..

I would also like to thank you for responding to one of  my first post when i first had my surgery, back in August. You where one of the few that had the largest tumors like myself.  ( 4.5 cm...) You maid me feel much more relaxed about my procedeure and reasured me that i would come threw alright..
thank yiou
konnie
AN 4.0cm @ time MRI (7-28-08)
Surgery 8-6-08 @Hinsdale,IL by
 Dr.Wiet/Dr. Kazan
Symtoms: sinus infection,numbness on leftside of face, hearing loss left ear & morning headaches

mimoore

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Re: How fortunate are we
« Reply #9 on: November 01, 2008, 04:25:51 pm »
Here here! I am so fortunate to enjoy my great life. My mother called this a terrible year and said she can't wait for 2009. I told her it was a great year, finally,after 10 years of searching, I was diagnosed and had surgery to rid my body of 'the invader'. I am happy no regrets, even with my small complications. I am here to love and enjoy my children, my darling husband and my treasured family and friends. What more could I ask for?
Michelle  ;D
Retrosigmond surgery on June 4th, 2008 for an AN. 100% hearing loss and facial paralysis (was not prepared for facial paralysis). Size: 2.3 cm, 2.1 cm, 1.8 cm. some tumour remains along facial nerve. Pray for no regrowth. Misdiagnosed for 10 yrs.

Debbi

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Re: How fortunate are we
« Reply #10 on: November 04, 2008, 12:43:42 pm »
Konnie-

You are SO right on with this!  I presently know three people with brain cancer and none of them are facing good outcomes.  It makes my AN seem trivial by comparison and it makes me realize that I am truly lucky.  Thanks for this post, Konnie!

Debbi, counting my blessings....
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

hannie

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Re: How fortunate are we
« Reply #11 on: November 07, 2008, 02:29:37 am »
My doctor friend said to me when i was feeling down 'if you have to have a brain tumour, AN is the one to have.' That helped me put my tumour in persepective and be more positive.  Reading on the internet and listening to others' experiences of other tumours and in particular cancerous tumours, makes me feel so lucky. I try to remember that everyday when i get a little self pity-ing.

Hannie

konnie

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Re: How fortunate are we
« Reply #12 on: November 09, 2008, 09:36:30 am »
donnalynn
I agree beutifully put,
 We do need more people like you in this world.
you have been through so much  and to be able to be as possitive as you are, is truly an inspiration...
Bless you ,
Konnie
AN 4.0cm @ time MRI (7-28-08)
Surgery 8-6-08 @Hinsdale,IL by
 Dr.Wiet/Dr. Kazan
Symtoms: sinus infection,numbness on leftside of face, hearing loss left ear & morning headaches

Sue Vogel

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Re: How fortunate are we
« Reply #13 on: November 09, 2008, 10:57:41 pm »
Konnie,  My husband was not with me when I got my AN diagnosis, so I had to tell him when I got home.  He said the same thing, "it could be worse....it could be cancerous, and I could have been given 6 months to live."  So we put things into perspesctive fairly quickly.  It was still scary and the road to recovery is tough, but I see everything as a learning experience.  We become better people as a result and hopefully can help others with adversity.  We're definitely the lucky ones.  Good for you for reminding us.  SUE 
3 cm left side
Translab. surgery 10/13/08
Dr. Gantz/Dr. Woodson
Univ. of Iowa Hospitals and Clinics
SSD, adjusting to balance issues
BAHA surgery 1/29/10 Dr. Gantz/Dr. Woodson (dynamic duo)

Carson

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Re: How fortunate are we
« Reply #14 on: November 11, 2008, 08:03:04 am »
So true Konnie,


My babysitter's daughter (who is 9) is dealing with a hammertoma.......as well as a cerebrul disfunction and chronic fatigue. She was a completely normal 8 yr old and last year in October she began to get these horrible headaches and blurred vision.....they ran so many tests here and after 4 months of tests and continued worsening of the illness they were told she had hashimotis thyroidism.  Something no one in Columbus could help with......then she couldnt walk she  had numbness from her forehead to her thigh on the right side....She had to be taken out of school. 

Went to so many drs, neurologist, phychotherapists....and then  told this was all in her head...like if a heart attack patient has a heart attack when shoveling the snow they will be affraid to shovel the snow again...... since she was weak she was affraid to walk or open her eyes!  This little girl was making it all up in her head???

 My babysitter would come home crying from these appts.....No one would help her.....finally through a prayer group that reached a church  in Cleveland.....they were able to put them in contact with a DR at the Cleveland clinic and after a few trips and a brief stay they have begun transfusions.  But only after she has completely lost her eyesight and has severe nerve damage.  And finally after pushing from the grandmother did they do another MRI to see the hammertoma.....Surgery is not an option b/c of its placement......not now anyway....she is too young.   The first transfusion helped.....she is starting to open her eyes again, however she cant control the movements of her eyes or the constant twitching of her arms.  She is regaining her personality back...I saw her a few weeks ago and she gave me some little girl attitude....LOL ;)  The good news is none of this is cancerous....but it can't be just taken out like an AN....so you are soooo right......it could be sooo much worse!!!  I thank god everyday that my father is doing so well even just a week (today) out of surgery!!! 

XOXO
Carson
Loving daughter to my
Father recovering from AN surgery
9/4/08 at The Ohio State University Medical Center
Dr. Welling and Dr. McGregor
GO BUCKS!!!