The other side effects of AN Surgery

[rntiggergirl]

Hi-
I have also lost the hearing in one ear. I had a BAHA (bone anchored hearing aide) placed last year and started wearing the device last June. It has given me to ability to function more normally and return to work as a nurse. It is not perfect but it really helps and just keeps getting better with time. It also helped with my self esteem, because I was able to gain something back that I had lost. I still have some other issues that keep popping up when I least expect it, then you just have to take it one day at a time or even one minute at a time.  it takes a short (30-60min) outpt procedure to place a titanium screw in your skull, I had the procedure without sedation and just local anesthetic. It works by bone conduction to the other ear.  If you are interested check out the manufacturers website at: www.entific.com.
Hope this helps!! Hang in there!!
Cheryl 

[amn70]

Hang in there. I am only three months post-op but am still experiencing some of the same things you have described. I am now deaf in my right ear (translab approach) and have had chronic tinnutis and a continual loss of hearing since I was diagnosed 4 years ago with my AN (FSR first back in Oct. 2001 than surgery in Jan. 2005). I look at it this way--at least I can hear out of my other ear. My family and friends know that if they want me to hear them, they have to talk to my left ear. I also politely ask work associates and clients to speak up if I cannot hear them and they are fine with this. I also enjoyed not having to hear my ex-boyfriend's snoring--I just slept on my good ear and I could not hear a thing I am plagued with balance issues, a loud ringing in my ear, dry eye and a very stiff right side of my face (paralysis still lingering). My headaches and neckaches are awful. I have a great support system at work and at home and I hope you do, too. I also try to focus on the positive--my surgery was a success, I was able to run on the treadmill in two minute spirts (coming from someone that was running 8-9 miles at a time), I can still laugh, I am able to walk, talk, laugh, cry, spend time with friends. All the best to you.......

[welchy]

amn70, Did you have any facial paralysis after your surgery, or have you always been able to laugh and cry?  That is what I am missing the most.

[amn70]

Welchy--I don't know if you received my response but to answer your question, yes, the right side of my face became paralyzed after my surgery and it still partially is. I had abrasions on my right cornea and until recently, could not close my eye (still does not close completely and I cannot where my contacts). I have a slightly-crooked smile (it has improved) and my right ear sticks out as a result of the fat graft to fill in where my skull was drilled into. I considered myself a fairly attractive young woman before the surgery and hopefully, I'll get back to where I was pre-surgery not only with my looks but with my total quality of life. Take care.

[iowaboy]

I too lost all my hearing on the right side. All the posts to you are very good advice! I have facial paralysis and dry eye. It is the most frustrating part. After my prolonged stay at the hospital (due to a CNS leak) I have learned to embrace all the little things and realize how lucky I am to live in this day and age! If I lived in a third world country, or not that many years ago, this would have been a slow death sentence (the thought shocks me when I think of this!). We are all very lucky to live here in the US, and to have survived! I count my blessings and it has helped me get in touch with my spirituality. My biggest asset is that I am a fighter and I will get better. I must maintain a positive attitude! I realize that I am the sole judge of my attitude, and I CHOOSE to be positive, because that is the only thing that will help in my recovery. I am wishing you a more speedy recovery and hope my little words help somewhat.

[msuscottie]

All I can say is, "Keep your head up."

I'm about 7 months post-op for a 3.5 AN. Complications with brain swelling almost costs me my life and I was in the hospital for about a month. I was really depressed right after surgery with the deafness, weakness, dizziness, dry eye and uncoordination, but after my surgeons told me that I almost lost my life, it puts things in perspective real quick. I'm still somewhat depressed being a very active 29 year old guy before surgery and not being able to do much now-a-days. I tried to shoot baskets and my left hand/arm just totally forgot what to do so I look like a 4 year old out there. Same goes for wearing a baseball glove on my left hand, I've reverted back to my coordination as an 8 year old little leager. I often find myself "just wanting to be normal." I play poker with friends a few times a month and I can't shuffle cards which is a bit embarrasing, so people have to do it for me. I also get frustrated/embarrased when I can't hear people. I went to Vegas a few months ago and it seemed whoever was sitting on my bad side (left side) always seemed to whisper something in my ear. Instead of getting into it, bringing it up and possibly making a total stranger feel weird, I just kind of laughed and acted like I knew what was going on. It's definitly very frustrating and embarrasing, but at the same time, I vividly remember being stuck in the hospital for a month and just staring out the window praying that I'd be able to smell fresh air at least one more time before I died, so thinking about Vegas & Basketball is a problem I can deal with. It's weird not taking anything at all for granted. I try to act as "normal" as possible, but when you have to think about each step that you take, it makes you pay attention to the little things. That's a gift we should all be thankful for. Best of luck.

[Pembo]

Hello everyone. I am now almost 11 months post op. I think this has been a good thread. An's are so much more than just a surgery to remove them. Our life changes are something that we have to adapt too because what else can we do.

I still have my up and down days. There are those moments when I just wish I was normal and other times I almost feel normal. I did the BAHA trial headband and will start the insurance process soon.

As I told a friend, I go on because what choice do I have?!

[heyyouconnie]

I had surgery on Mar 1. 12 hour surgery and 3 days in ICU. I did good while in the hospital room tho and went home early.  I wish the recovery was faster, but I must say, I am getting along fine. I had to walk with a walker in the beginning and now have graduated to a cane. I use to have bad headaches and they are gone. I lost my hearing in that ear too, but I had been loosing it for years, and my hair is growing back. But the facial paralize (sp) is very hard to deal with. I hate to eat in front of people. I have the gold weight in my eye lid but I still can't close it all the way. And if it gets dry, it hurts! Or dumb me, I can't judge depth and poke myself with the eye dropper, and that hurts worse than anything. 

It is amazing I even found out I had a tumor. I went to the Ear Nose and Throat doc for allergies and just mentioned to him that I was having a earing loss over the last few years. He sent me for a MRI, and I thought he would say I would need a hearing aid, NOT BRAIN SURGERY! But life is what it is and the only way to cope is to walk thru it every day. Like my daughter said to me, I might have a "new normal".

[ecrmedia1]

     I'm 10 months post-op after the surgical removal of a 4.5 cm AN called a glomus jugulare and an additional 2 cm carotid body tumor that sat in front of it.  The second tumor was not discovered until I was having the first tumor embolized in prep for surgery.  My surgery involved what is called the intra fossa approach which was very complicated.  My facial nerve had to be re-routed.  The upshot of post surgery includes profound hearing loss on the left side since all of my hearing apparatus had to be removed, facial paralysis, inability to swallow (I have a feeding tube), some balance problems, difficulty speaking and chronic coughing.  I had to have another surgery 2 months after my AN surgery to place an implant in my vocal cord area to move them closer together and allow me to talk without losing my breath.  I have since been hospitalized twice with viral meningitis.  The really scary thing is that all of this was on the left side and when those tumors were embolized, another was found on the right side and is in a wait and see mode.
     I'm 48 years old, I owned a business that I had to sell because I wasn't capabile of running it post-surgery.  I wasn't even sure I would survive the surgery.  My insurance company decided, in their infinite wisdom to not pay for any of this surgery, even though it was pre-approved and have dropped me, leaving me with staggering medical bills and no way to pay for them.  I have tried to look for work, but have been turned down.  I guess I'm a liability and too high risk.  Am I angry?  You bet.  I'm thankful to have my life, but not the way it is.  I'm feeling a profound sense of loss for who I was and what I used to be capable of doing.   I'm sure that time will heal some of the wounds, but if you ask me today, I'm doubtful.  I feel hopeless, useless and worthless.  That's the other side effects of my AN surgery.

[Becky]

"Am I angry?  You bet.  I'm thankful to have my life, but not the way it is.  I'm feeling a profound sense of loss for who I was and what I used to be capable of doing.   I'm sure that time will heal some of the wounds, but if you ask me today, I'm doubtful.  I feel hopeless, useless and worthless.  That's the other side effects of my AN surgery."

Hi.  10 months is not long yet.  Are any of your symptoms temporary with a time-frame for further recovery?  I hope for the best, for you.  In light of the not-so-good, I would like to offer you hope.  Human beings, in particular, have the astounding ability to survive and adjust.  The adjusting is very difficult especially at first.  (That, and waiting for improvement/treatment.)  You survived an awful ordeal, and your life still has a lot of value!  Sometimes it just takes a shift in perspective/values. 

First, you survived the surgery :)  Second, I hope you have secured an income, since you had to sell the business that provided your needs.  Hopefully with legal help you can work out these issues and those regarding unpaid meds, to see what can be negotiated. 

As to your feelings, these are quite normal for what you are going thru!  I don't know if you have children, but if so, we all learn (hopefully) sooner or later that our children are the most important things in our lives.  When we are gone, our children are what we leave behind in this world.  So, if you do have children, then you are especially not useless and worthless.  If you don't have children, others find your strength of value in their own troubled lives, as I have!

The only exercise I can really do right now is pedal on a stationary bike while keeping my upper body/neck as still as possible.  I used to be VERY active, and until I discovered the stationary bike (recommended by my family doctor), I didn't know what to do!  Life is about so many things.  It really hits us when we are faced with difficult times, when we're forced to find those other things!  Someone once mentioned living in a smaller world with post-tumor issues.  Yes, I feel as tho I have been living in a much smaller world, now, but you'll find, somehow, the world is big enough ... for you to still belong

While acknowledging your very real and valid feelings (always do that), know that no matter what, there is someone worse off.  You still have a lot of value to a lot of people in ways you may not have yet discovered. 

I hope this brings you courage, as you are definately not alone in your feelings.  Some things remain hopeless (and we can learn to find humor in those things), but your value and worth can be measured in many ways, and in ways you never before imagined.  Make a list of all the things that bring you enjoyment, and find new things (try new things!).  Humans are very adaptable

I wish you the best!  It's ok :) 

Becky

[Monica]

I had surgery in Feb of '04 for a 2.5cm AN.My husband says I am the bravest person he ever knew.I thought about it for a while and found he was right. Those of us who go through with the surgery are incredibly brave. We chose the surgery over the wait and see. I am not the kind who could do the wait and see - I needed  to move past the tumor. Besides,it was too close to the brain stem to let it have control over me.

I was very fortunate - While I lost the hearing in my right ear and had to have PT to retrain my balance,I did not experience the problems that you are dealing with.   The tough part for me was loosing my Mom a month before I found out about the tumor and loosing my Dad 3 months after the surgery.  I have neck pain and have done PT for that. If I keep up with the exercises it all works. My balance is only off when I am tired. I get headaches but try to keep on top of them by taking tylenol at the first sign. After a year without hearing, I was fitted for a CROSStalk hearing aid (by Phonak). I have a transmitter that hooks behind my deaf ear and sends sound into a hearing aid in my good ear. It's been a tremendous gift.

There are some days that are frustrating and tiring - when my skull hurts, I get a pain in my ear or I am just tired. When those days come I try to go easy and give more to myself than others.  There's no magic cure for all of this but with time things do improve. I certainly hope they will for you.  Take care - Monica

[RH]

I had the AN removal op just over 12 months ago and reading the experiences of everyone here has echoed my own feelings. Mine was a 3cm AN and was touching the brain stem so from discovery to removal took just 5 months. I only had 3 weeks notice for the operation so I didn't have time to dwell on the negative aspects of the situation and I guess this has helped me post-op too. Like many of you I mourn the person I was, I know there are certain things I can't do any more (like listen to stereo headphones!!) but at least I am still here, I have a new life and a new future which I can enjoy with my wife and children. Being positive has helped my recovery, and although I have days when I wish I didn't have to constantly strain to hear what others are saying, or not get so tired so quickly, or even to get my brain in gear I am happy to be alive and realise that I just have to adapt. Bon voyage!

I wrote a diary of my experiences over the past 12 months - feel free to check it out:
www.geocities.com/an_diary2004

Thanks
RH

[Russ]

Hi
  It takes about 3 - 4 gentamycin injections to destroy the balance function of the inner ear totally. This is very much akin to a surgical VNS, Vestibular Nerve Section.
  At least with surgery they may be able to preserve some hearing but with gent, it is unknown how it will effect. Many take a hearing 'hit'.
  I hope you're doing the right thing and have had more than one opinion by Drs in treating facilities well qualified and well experienced in acoustic neuroma treatment and removal as well as complications.
  Best wishes to you!
  Russ

[Monica]

Pembo,
I hope that at 1 yr post surgery that you are doing better.  I can not speak to the facial issues as I was one of the very fortunate ones on that front.

I can make a suggestion on the hearing issue.  I lost the hearing in my right ear as the result of surgery.  At just about the one year mark I was fitted for a CROSTALK hearing device.  The company that makes it is called PHONAK (phonak.com). The system consists of a transmitter that hooks on my right ear and transmits the the sound over to my good ear which has a hearing aid fitted to it.  One of the things that I had been missing out since the surgery was spontaneous humor and wit.  It's not the type of thing that you can ask someone to repeat, ya know?

I hope this info helps.

All the best -
Monica

[rebecca]

Hi,

Well, I lost my hearing and have had facial paralysis, which is getting better--I measure it by how many teeth I can see on either side (6 on the good side and now 5 on the bad--).  The deafness, well, the embarassment comes in not asking someone to repeat themselves--which I did the other day with a group of parents and my daughter's parent appreciation day.  Afterwards, my husband pointed out his embarrassment in my sheepishly nodding my head to one of the dads, when my husband knew, I had no idea as to what the heck he had just said.  My husband said, what if he was asking you if you wanted to join a threesome and you just dumbly nodded your head and grinned.  You've got to see the humor in that.  Actually, that's how I get through alot of the things that would or might make me sad or angry--is I try to find something funny about it and move on.  Life is so short in the long scheme of things, I truly feel blessed to be alive.

I hope that you will come to see the many blessings that have been given in your life.  It's hard when you might have been promised something that didn't come to fruition, but there simply are no guarantees in life.  My surgeons made it clear that one of the things that could happen, is that I could die, if they were to sever an artery, and that I should prepare for facial paralysis -- though temporary.

Each day as you heal and the nerve itself heals, you will see more movement. 

Best of luck to you and may you be of good cheer!