The other side effects of AN Surgery

[Pembo]

   I am 9 months post op. I am still dealing with facial paralysis and adjusting to SSD. But there is so much more to this surgery that I never knew. The drs said before surgery, we will get that AN out of there and you'll be fine. But that was a huge lie.

I'm not fine. I'll never be fine again. My new life is so much different than my pre-An life.  I didn't start having major symptoms until 3 mo pre-diagnosis. I never had hearing problems.

Now I'm deaf in one ear. That isn't just a small deal. It changes life dramatically.
I have facial paralysis. Sure, it's slowly starting to move. But my eye still doesn't blink or tear.

My self-esteem has taken a huge hit. I feel different in so many ways.  I know that grief comes in many stages and I'm angry right now.

For those who are long-time survivors, how have you coped?

[alwaysanonymous]

well i have had deafness due to my surgery for 4 years. it is very difficult when someone is talking to you on your deaf side and you don't want to admit to not hearing  them but you want to hear them too. i cope with it by thinking that much worst could have happened. in surgery, people can lose their lives. so just think we are the lucky ones, we are stronger than most people because we have been through something that most people could never even think of. i never had facial paralysis but my dad did(he had an AN too) he was very embarrased by the droopyness of his face and like you he could not blink and so his eye was dry. it has been about 4 years for him too. he has made so much progress. and for his eye, he got a gold weight sugically put into his eyelid to help him blink and it has made all the difference in the world. now he only has to use drops in the car mostly.  there is not much you can do for your face except to wait. he has gotten back soo much of his facial function. he had part of his lip dropping when he tried to smile but now he can kind of get it there. he is also 52 years old though. the younger you are, the better you recover. just think of how in a few years you will be comparing your picture from now to then and you will be so amazed and excited!

[evelyne vandersand]

Hi,
  I had my AN surgery and I am also deaf on one side. I try to sit in different position to better hear people but I have found that being straight forward is the best answer. They do not understand what we need so I tell them : I need to see your mouth, You have to turn your head on my side, do not chew and talk to me because I won't be able to understand ! With all this, people make an effort ! And I make them repeat all the time ...like it their fault and not mine that they are not speaking clearly... In a restaurant, I try to sit againt a wall and not against a window so the noise travels better.
   It does not mean that I am never blue, we all are sometimes. Yes, our lives have changed but we are alive. When I think of children with terminal cancer, the fact that I am still here takes a different dimension... I try to remember the feeling just before surgery and I look at nature and try to enjoy it all. May be it is your normal circle for you to be angry first then to reach peace of mind... We all have to take our own steps...
   Good luck and all the best.

[Becky]

At a restaurant, instead of sitting across from my friend, my friend sits next to me on my hearing-ear side.  I guess you could say it has brought us a little closer (smile). 

Becky

[wanderer]

It's all in how you see the world I guess.

I hear better now than I did before surgery.   I am deaf on the surgery side, but at least now I can understand people when they are speaking.   

Yeah it's a pain when you have side effects but it could be much worse.   I see people all the time that I wouldn't want to trade places with.

Make the best of it,  you only get one life,  no use wasting it thinking about how your life has changed and you aren't the same as before.

I am better.  I realize how much I took for granted before and now I have chosen not to waste any more time.

[Becky]

unless in thinking about how your life has changed, you can find solutions to make it better.

I'm reminded of something about the serenity to accept the things we cannot change, the courage to change the things we can, and the wisdom to know the difference. 

it really is all in how you see the world.

becky

[Pembo]

Becky, I do agree with you about the serenity prayer. I guess I'm just not at a place where I can accept all of this yet. I'll get there..........

[Becky]

You may not have to, Barb.  I think some of it will get better for you.  Change whatever you can.  It's just the waiting that is so very difficult.

Becky

[Zach]

Pembo,
I've just returned from my surgery to remove my AN ten days ago, so I can't offer much post-op insight into your problem, but I can from the standpoint of a long time experience of poor hearing on one side. I think my AN has been around causing hearing trouble on one side for about 10 years. For years I've found myself purposely positioning myself with folks on the right side so I could hear. In a restaurant I put the good ear to the wall, so I can catch reflected sound from companion's voices off the wall (a bit of free sound reinforcement) and so I can help tune out the rest of the ambient chatter. Not a perfect solution but it helps.

Most of all, I found it very expedient to just plain let folks know when talking to me, that I only have one ear that works worth a hoot, and if they want me to hear them, they need to be on my good side. It doesn't bother me to let folks know up front my situation, and sure makes it easier to hear! Friends, family, and work associates that know me very well all know I'm a Right Ear Guy, and handle it well.

That said, since my surgery, I have no hearing whatsoever on the left side. I thought this might be an issue for me, but I've found it's just no big deal. Perhaps this is because the hearing on the left side was so bad for so long I just got used to it. Losing what was left wasn't far to go to total loss.

To a certain extent, I think it may be easier to hear more clearly now because I don't have the garbled input from the left cluttering up the good sound from the right.

Not sure if any of this helps or not. Perhaps for you too, time will ease the situation. When I'm tempted to start thinking Poor Me, I make a point to focus not on what I lost, but how lucky I am. I've been reading this forum and the old e-mail list since I was diagnosed last November, and much of what I read is heart rending, and makes me grateful that I came out as well as I did. With the exception of losing the rest of my hearing, I have zilch for side effects from the surgery. A few more weeks to get my stamina and energy back, and I'm headed back to the real world.

Zach

[ansurvivor]

I had my surgery 3 1/2 years ago. I still vividly remember the dr. telling me before surgery "Don't worry. It's just a benign tumor. We'll take it out and everything will be ok." Two cases of meningitis, two major strokes, a seizure, SSD, and facial palsy later, I consider myself an AN survivor. I remember having the same thought and feelings that you are having. At each follow-up appointment I would hear...Give the facial nerve 6 weeks...Give it three months...You'll be back to normal by six months. It has never fully recovered. What I have learned, however, is that keeping a positive attitude and living my life as normally as possible is extremely critical in my well-being. I teach high school and haven't told my students at my new job that I'm deaf in one ear; although, I suspect they know something is wrong. In most situations I try to place myself in the best hearing position possible. You'll continue to learn how to manage.

[ajhunsicker]

Being almost 1 year post-op, I think the thing I have learned for myself is to take one day at a time and to put yourself first.  So whatever it takes to make YOU happy.  Don't be afraid to get counseling if your don't have enough support from friends and family.  My sister has been my biggest supporter, but unfortunately she lives 3 hours away.  So, I take the time at least 1 weekend a month and visit with her, because that is where I feel my best.  Put yourself first!!!

[iowaboy]

I am now just 2 weeks post-op. I have some facial paralysis, dry eye, etc. The only help I can give you is that a positive attitude is always better than a negative one. Only you can choose which one to have. Negative = negative results, always! Please try and stay positive and I hope you get through this OK.

[Kim]

I'm almost 7 months post-op, and I'm doing wonderfully.  I too am a different person for having gone through all of this, though in many positive ways.  I don't look at my hearing loss as a handicap; I've just adapted to listening differently.  Yes, there are some favorite activities that I'm not quite as confident doing because of rare, slight balance issues, but there are many other great things in the world to experience.   

Through this experience I have learned mainly 2 things about life:

We are all in too much of a hurry, too much of a routine; we have forgotten to take the time for people and wonder.

We take our bodies and our health for granted.  Look at the people with major, unsolvable problems.  We all saw them at the hospital.  I left my hospital; many others didn't.

I am so much more positive and appreciative, now that I've been forced to slow down and smell the flowers.  I'm so grateful to still be here that I could care less about my hearing.  A couple of months after surgery I heard a young woman speak who wound up paralyzed after a car accident.  There is not a happier, more grateful person on the planet.  She was truly inspirational.

Facing a brain tumor is not easy, but hopefully it doesn't have to be horrible.  For me, it was definitely enlightening.

[dpetty]

Well I had a 7.5 x 4 AN removed May 1,2001, the operation lasted about 12 hrs. I was in very bad shape but I found a group of skilled surgeons at the University of Arkansas Medical Sciences in Little Rock and by the grace of God and a load of prayers I came thur it with no major problems that I couldn't live with. I did lose my hearing but it was a small price to pay due to the aggressive AN I had. I have had a clean report ever since.

David

[dpetty]

Guess the biggest issue I have was terrible pain from my neck first couple of years were tough going but got into a gym and begin forcing those neck muscles work again so now about the only time I have pain is during a weather change.

David