Author Topic: Are you still your "self"?  (Read 7261 times)

Suu

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Re: Are you still your "self"?
« Reply #15 on: February 03, 2012, 09:47:50 pm »
All that has changed is my FUTURE. It is going  to be different than I had planned. Not better, not worse, it is just going to be different.

James - you said this really well. I'm living a different kind or normal and I'm finding that the new me isn't too bad afterall  ;D

Twindy - all the best of wishes for your new kind of normal too.

Hugs,
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(,.•´ (.♥ •´ *Suu
4cm Left side AN Translab August 18th 2010
Facial nerve not working
Nerve conduction Jan '11 Repeated 23rd May '11
SSD left side
5 ops in 6 weeks to fix CSF leaks
Tarsorrhaphy 9 Mar '11 Extended 26 Aug '13
Sling Thur 16 June '11
12/7 nerve graft 9 Feb '12

stephSF

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Re: Are you still your "self"?
« Reply #16 on: February 06, 2012, 11:49:17 am »
I had the same fear...but I am now 12 days post surgery and I am the Same me.  I still laugh at my kids and animals.  I still feel warm smiles when I look at my partner.  I bop my head a little to music...I love the sunshine.  You know, the gift of courageously walking through the diagnosis and to the other side of treatment is, that if you are a mindful person...want love and life, you will have it.  You can't help but feel greatful for life.  I look at Cancer survivors, war vets, mentally I'll etc, and we are lucky that our rumors are benign, surgery usually gets rid of it.  I also believe that 90 percent of a great outcome is totally psychological!!!!!  You don't have to wait to get on with your life, and it's not that the surgery changes your personality or anything.  Best wishes
1.6 cm AN Translab with Dr.'s Friedman and Shwartz with HEI on 1-25-2012.  I am doing great!  Surgery saved my life :).   Be brave, have a great attitude, and hire the best surgical team!!!!

Crazycat

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Re: Are you still your "self"?
« Reply #17 on: February 08, 2012, 04:51:04 pm »
Am I still the same?

In some ways yes, in other ways NO. I was a decent musician and illustrator. Not anymore. The AN not only robbed me of my left-side hearing, but my left-side hand dexterity. It's a good thing we have computers and word processors today because my once beautiful, flowing penmanship has been trashed. Needless to say I don't draw anymore either and I loved to draw.

So, while I can say that I'm still comparatively healthy and thankful to have gotten through the ordeal as well as I have, I can also unequivocally say that I've been ripped off. But it all could have been worse....much worse. For example, over the past few years I've watched five close friends die from either cancer, heart attack and suicide and I was the one that appeared to be done for when I was sick.

On the positive side, I've had the best medical treatment a person could have and have met some of the nicest people I've ever met in my life since my illness. So, in some ways I may have lost out but in other ways gained immeasurably. It's a long story....
5cm x 5cm left-side A.N. partially removed via Middle Fossa 9/21/2005 @ Mass General. 
Compounded by hydrocephalus. Shunt installed 8/10/2005.
Dr. Fred Barker - Neurosurgeon and Dr. Michael McKenna - Neurotologist.

leapyrtwins

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Re: Are you still your "self"?
« Reply #18 on: February 08, 2012, 10:25:48 pm »
I am absolutely still my "self" - but I have a different perspective on many parts of my life and a greater appreciation for most things.

I'm almost 5 years post op and there is nothing I can't do now that I couldn't do prior to surgery - except hear out of both of my ears. 

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

Silver Sonnet

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Re: Are you still your "self"?
« Reply #19 on: February 11, 2012, 08:42:20 pm »
Excellent question (see how much fun we're all having answering it?)  My answer is a little trickier because now, six months after ret sig to remove an almost 3.5 CN tumor, I'm the me I was years ago.  I didn't realize how much I had changed, and when I did realize something was different, I chalked it up to age (54 now) or my diabetes.  I was moody, lethargic,  short tempered, etc.

Since the surgery, I'm the old, sunny me of my youth.  I always see the silver lining, my depression is gone, I'm (slowly) losing weight without even trying, my sense of humor is back (much to the occasional chagrin of my family and friends!) and I'm just enjoying life so much more that I have in years.

Are these changes because the tumor (well, one of them) is gone, or is it because I faced a near-death experience and overcame it?  I don't know.  But I know I would never even consider going back to the sad, depressed person I was before I was diagnosed just over a year ago, much less the crazy person I became after the diagnosis.

G_Man

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Re: Are you still your "self"?
« Reply #20 on: February 11, 2012, 10:17:47 pm »
Twindy
When I read your first post I got the feeling that what you were asking was something a little different than what you asked.  Then when I read your second post I felt even more that way.  What I'm saying is that it sounds like you are really asking, "Will people still love me no matter how things come out?  Will my friends still be there for me? etc." 
I've had a disablity all my life.  I'm legally blind from infantcy.  In order to have the best quality of life I can give myself, I do most things a little differently than most people.  I'm a high-partial which means that my vision is about as good as it gets for someone who is classified "legally blind".  One of my biggest issues with my AN is "Will people treat me differently? and yes also, "Will I be the same person?"  So I can only tell you what it's like to be me, in my life, you know.  I've dealt with my blindness for a very long time now.  I'm writing this with the words blown up so big on the screen that I can only see 3 lines of it at a time.  I listen to books.  I cross the street by following others at time.  I don't use a cane so people are not cued in to my disability.  I get funny looks when I take out my monocular in a public place to read signs.  I have a scale that talks.  I have a 5X magnifying mirror.  I could go on.  In my life VERY few people have even tried to figure out what I can see.  I've learned that I can't care what they think or how they look at me.  I'm a member of a very small group of people who have very unusual needs as far as being able to navigate the world.  In most ways I'm better off than someone who is totally blind.  People can understand that situation more clearly.  So my totally blind friends get more help form the public and they also get more disrespect.
So putting it all together I hope that when or if my watch and wait status changes and I have to have the operation I figure that those people who really love me now and really care about my well-being will really love me after the operation and really care about my well being.  That's what I figure matters in the end, you know.  The rest is all noise.  The ones who wisper about you regarding your AN are the same ones who used to wisper about the shoes you wore or the way you laughed or whatever.  That's just background noise.
We are both lucky to have found a group of people here in the ANA that understand where we are.  It's important that we all support each other in this because honestly I can see that a lot of my friends and family simply don't get it.  Just exactly like they don't get my blindness.  So that's just more noise to me.  Meet the new boss, same as the old boss.
Best wishes to you.
Stay strong!
Glen
Diag: 08/11/2009 Left side
AN: 0.6cm.  65% Hearing loss, tinnitus, fullness, minor motion issues.
hearing loss over 25+ years.  MRI in 2000 showed nothing.
Optical Atrophy from infantcy
Watch and Wait.
As of 2017 I am on a 2 year MRI frequency.

Twindy

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Re: Are you still your "self"?
« Reply #21 on: February 11, 2012, 10:41:25 pm »
I want to thank you all for your thoughtful heartfelt answers to this question.  It was one of my first questions (feel I've been firing them off pretty readily since) right after diagnosis.  I think I've mentioned more than once that my biggest fear was that my personality would somehow change due to brain surgery--not the experience of it as all experiences change us, but rather the actual physical nature of it.  I've read and re-read your warm comments and they have helped me to understand this process.  Thank you all so much!

MDemisay

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Re: Are you still your "self"?
« Reply #22 on: February 17, 2012, 12:38:57 am »
Twindy,

Good question! Depending on who you ask me or my wife, you might get 2 totally different answers!

Me, myself did notice a change in my ability to understand an analogy without being literal after the surgery in 2004. Doctors at Kessler did notice a decrease in cognitive ability.

My wife notices irritability and sarcasticness associated with my medication change from Dilantin to Keppra in 2005.

This makes me leery of any further procedures ( which they are recommending now that the tumor is growing again).

Hope this helps!

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!