Are you still your "self"?

[Twindy]

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.

[CHD63]

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

[Tod]

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

[Archer]

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!

[cindyj]

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

[waypoint]

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.

[lrobie]

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.   

[chloes mema]

 

[Jim Scott]

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

[Twindy]

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.

[Rivergirl]

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.

[sunfish]

Irobie, your son's comment is really funny!!

[Syl]

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 

[james e]

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!

[chloes mema]

F - future
U - under
T - the
U - ultimate
R - reality
E - explained