ANA Discussion Forum
General Category => AN Issues => Topic started by: Twindy on January 27, 2012, 07:46:39 am
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I've read so much about never being completely "normal" after surgery. My question is, in your core--your spirit, your thought processes etc. are you still your self? I'm so scared I will somehow be altered in my core or my "person" after surgery.
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Hi Twindy and welcome to this forum .....
Others will chime in here very soon, I know, but I feel certain the vast majority of current posters will tell you ..... as I am ..... that my spirit and thought processes are essentially the same as pre-surgery.
I am not a doctor, but acoustic neuromas (almost always benign) originate in the internal auditory canal, which is not part of the "gray matter" in the brain. That is why some people will argue that AN surgery is not "brain" surgery. Technically it is skull-based surgery, but within the confines of the skull. Some ANs encroach on the brain stem as they grow outside the IAC, which is, of course, a potentially dangerous situation. All that being said, whenever the skull is entered (or damaged), the possibility of swelling occurs. It is usually the swelling that causes pressure on the cerebellum. It is that pressure that can result in temporary changes, such as fatigue, thinking processes, etc. This is why most physicians give fairly large doses of steroids post-op to reduce this swelling.
I have had three skull-based surgeries and I can tell you that I am still the same person ..... intellectually, emotionally, and personality-wise ...... as I was before any of them. However, in my situation, I am now totally deaf in one ear and I have on-going balance issues (this is not usual). Those two things have altered the way I function in a group-setting (careful to position myself to best hearing advantage) and that I know I cannot walk safely in darkness. That has become the new "normal" for me.
But, you know what? ..... we all change the way we do things and think about things as we walk through life, depending on who we meet, what happens to us, etc. While having an AN changed the way I need to do some things, on my best days I simply forget I had an AN.
Tell us a little bit more about your situation.
Many thoughts and prayers as you walk this road with us.
Clarice
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I began to understand my life had changed when I was finally conscious enough after 32 hours of surgery to understand what had happened and to be fearful of the recovery ahead. I was scared, depressed, and suffering from wrong-headed sense of guilt about what I had put my doctors and family through. Silly, wasn't it? I worked through that enough to leave the hospital with a sense of purpose to recover fully.
Having never really been truly ill or disabled previously, and being a bit of an arrogant bastard, I had no real empathy for the real physical and emotional problems that people may have. I got educated pretty quickly.
Two years later, am I Normal? Yep. Am I the old me? Nope, I'm better than that. All the passion, the intellect, the imagination are still there, and now tempered with empathy and greater understanding. I hope to hold on to that and not go back to the old me.
Despite spending my current days with a great deal of nausea and fatigue from daily radiation therapy, I would not have missed this experience (it sounds crazy, but you can check, I have said it before here). I've learned so much that it has been worth it.
No one can say if you will have any changes, after all, this is your journey. It seems most likely to me that you will still be you, in much the same way that the you of today is the same as the you of 10 years ago.
I hope this helpful...I am now off to therapy,
Tod
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Twindy,
I have to agree with Tod and Clarice. There will be some change in your life due to this. But that is the same as with anyone, not just those of us with ANs. Everyone deals with change in their life. Someone close to you passes away, a child is born into your life, a friend moves away, you make a new friend, all experiences in life affect change. You heart and soul remain with you though and you learn to deal with the change. As Clarice says, it is a new "normal". You are still you though.
Good luck and God Bless!
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YES, I am...even though I (as many, if not most AN patients) am now deaf in one ear and do have some residual wooziness (we call it "wonky head" around here :)) - my new normal. Yes, you may have a new issue to deal with, but it will still be the same YOU dealing with it :)
Wishing you the best!
Cindy
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Absolutely, your mind and thoughts remain yours. None of that changes.
Its just a new normal that CindyJ describes that you learn to adjust too. No one can make you feel inferior or different unless you let them.
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In having a family discussion with my husband and 11 year old son about my treatment options, my son asked me if I would be a different person if I were to have surgery. I told him that I believed I would still be the same person, but he was going to have to start doing things on his own more instead of relying on me. He then said he thinks I should have radiation instead. :)
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:)
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Twindy ~
Good question.
Yes, AN surgery is a big deal and one is somewhat changed but as previous posters have noted, often in good way. Of course, any severe post-op complications can alter one's quality of life but most of the post-op problems are temporary and/or treatable, few, if any, are permanent, save for unilateral hearing loss, which can be greatly helped with a BAHA or other device.
In my AN experience, which was relatively complication-free , I didn't lose any of the attributes that I had, pre-diagnosis and I don't feel that I was drastically changed, except to have more compassion for others and being less self-centered. No one in my family has ever commented that I wasn't my 'old self', for better or worse. Of course, every AN patient will have a slightly different experience but losing one's actual persona is probably not something to be overly concerned about.
Jim
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Thank you all, you have uplifted my spirits a bit, as this is my biggest fear. I feel I can get through recovery if I am still the strong person I am today. I'm fearful I'll be the one everyone says, "you know, she had brain surgery and she just hasn't been the same since (wink wink)."
Thanks again for your thoughtful comments.
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I hoped that after surgery I would be some sort of genius, maybe I could pick up an instrument or be an artist......all I got was for the first few days I was a lefty not a righty, it was kinda bizarre. It has been 8 months and I will say for me, some things are better and some are not. I still have pain and pressure, the dizziness is better, the tinnitus is just normal now, I am still really tired and not real motivated. I have heard some say it takes about a year to heal so I guess I am still waiting to feel great.......sorry just being honest for you.
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Irobie, your son's comment is really funny!! :)
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Twindy,
For a long time, I felt as if I would never be able to put this whole AN issue behind me.
I could accept the hearing loss & luckily my brain has finally adapted to the way I hear now.
The most difficult parts of this whole AN experience have been the dizziness & the chronic headaches. All along I have tried therapy for balance/dizzines & medication, heat, ice, liniments or whatever I could think of to eliminate my headaches.
It has taken me 3.5 years to get to a point where I feel I can put this behind me--not forget about it, but move on.
I don't know if my proactive measures have helped or if time alone should get the credit. I feel like I haven't felt in at least 10 years. My head feels clear. I am in a good mood most of the time. I am not the same cranky person I always remember being when I felt tired.
Before the AN, my day at work usually ended with my head feeling hot as if I had a fever. This is how my day ended when I was in grammar school, too. When I got tired, it affected my mood. I don't remember feeling tired & not being cranky.
I don't know if it's a personality change, but I'm a much happier person now. But the oddest thing is that my head doesn't feel feverish at the end of the day anymore. That is new to me. I like it & I hope it doesn't go away.
Or maybe, I felt so crappy for the longest time, even before I knew I had my AN, that I'm just happy to feel as good as I do now & nothing is going to ruin my mood.
Syl
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I have been giving this question a lot of thought before I answered, and I thought a lot about who I am or what I am. I am myself when I am all alone and I am totally self sufficient, but I am part of a successful marriage. I am a dad, grandfather, neighbor, and lots of other things that are part of being human. None of the changes from my AN have changed my status with anyone, wife kids, etc. I am the same old guy, boring but reliable according to my wife...laughing as she says that.
I am very different to myself. I was always very athletic before my surgery. As I have aged, 62, I have gotten slower, and all those things that happen as you grow up...we call it growing up rather than getting older...just sounds better. But my balance is bad enough that I cannot run, cannot ride my bike anywhere except on flat ground, etc. I still lift weights everyday, and my body looks like I am 30 rather than 62. but lifting is not lots of fun like running or biking. So I miss out on that type of fun. I was a wood worker, and made furniture for fun, but I still have 10 fingers, and know that my wonky head can easily run my hand through a saw, so I sold all of my equipment. That was going to be what I was going to do in my retirement. But I still have 10 fingers and I am trying to learn the guitar. Something new, something different.
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. I enjoy everyday of my life. I set goals while in the hospital, just to keep me busy. I even had a goal when I was coming out of surgery to see if I could aim my vomit to determine if my face was still working...it was still working just great. I do not get on a pity potty and worry about how I am different. Regardless of how your treatment works out, It is up to YOU to determine how you live your life. Just go out and have some fun! Life is really good!
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F - future
U - under
T - the
U - ultimate
R - reality
E - explained
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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
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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
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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....
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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
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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.
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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
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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!
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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