ANA Discussion Forum
Archive => Archives => Topic started by: Pembo on March 09, 2005, 02:39:29 pm
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:-\ 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???????
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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! :)
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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.
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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
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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.
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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
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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..........
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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
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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
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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.
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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!!!
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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.
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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.
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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
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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
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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 ;D
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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.......
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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.
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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.
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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.
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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.
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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?!
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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".
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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.
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"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.ÂÂ
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.ÂÂ
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 :)ÂÂ
Becky
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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
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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
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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
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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
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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!
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I was about the same age (34) as you are when I had AN surgery (24 yrs ago). I lost my hearing in my left ear. I have come to live with it as simply a unique handicap. I balance visually. When I am on the phone I explain that I can give my entire attention to the caller and have no outside distractions. I have a little palsy by my mouth and some uncontrolled tearing in my eye. I found that I am determined to be "handicapped" and therefore am eligible for employment under the "hire a handicap" law (you know the one that says they have to not refuse to employ or actually have a certain number of handicapped employed). In any case I am just absolutely overjoyed that the surgery only took my hearing instead of another sense (like sight) :)
K
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You sound like my mom. Mom had a gamma knife treatment in May and on September 16 her "life completely shattered." (Her words.) The doctors (and their nurses) don't mention the flip side-they just present you with a slick pamphlet and present the gamma knife like it's this miracle Star Trek technology. Mom's in a nursing home now after 18 days of hospitalization (Decadron-induced psychotic episode) followed by 12 days of intensive OT and PT. Debilitating nausea and vertigo, blurred vision, unstable gait, deafness (when she wasn't before the treatment). She says now she'd never have it done. I live in Los Angeles and have been back home for three months-and counting. I've now begun looking into alternative therapies-acupuncture will be next, yoga. (Mom is 69 and it really doesn't matter how young or old-it's terrible to lose independence.) I hope this email finds you feeling better.
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I had forgot about this thread. I just thought I would share a little bit of my experience as I am almost 1 year post op from my tumor removal.
I now realize that pre-surgery I was having more symptoms than I realized. I had significant loss of hearing, balance problems, and aphsia (not sure if that is how it's spelled but I had trouble thinking of words, began to studder and seemed to constantly be tongue tied) Almost all of this has stopped since surgery.
Over the last year I have had many surgeries due to complications. This year 7 surgeries total. Now I know some of those may have been avoided had I been treated differently, but hind sight is always 20/20.
I had facial paralysis thankfully it subsided, I had headaches, and they have gotten better. The biggest side effect is that I have been wrecked financially one day I will recover this too it's just going to take some time.
I have to say though all in all my life is not much different than before. My face is different, I don't have hearing in one ear, and I am on the verge of losing my business and such but really I haven't found it difficult to cope. I actually have found sleeping easier with being able to block out sound.
It definitely hasn't been an easy ride, but I can't say it has been terrible.
I know many people suffer much worse than i have so I don't feel I can really complain.
My final thoughts are, realize you can handle all of this. It may not always be easy, just don't give up. So many have gone through so much more and still have had wonderful lives. If they can do it so can we.
Good luck to all of us.
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Wanderer,
Thanks for sharing this with us. You are very special and amazing to me. With all the troubles you have experienced, I have always seen positive attitude from you. Thanks.
David(707)
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I CAN RELATE TO YOU BEING ANGRY, I GET SO MAD SOMEDAYS I HAVE TO GO IN MY ROOM AND JUST SIT ALONE. I AM 3 YEARS POST AND FOR THOSE WHO DOESN'T HAVE A HARD TIME AFTER SURGERY WELL! ROCK ON.. MY LIFE SUCKS... I DON'T MEAN THAT AS EVIL AS IT SOUNDS BUT ITS TRUE, 1ST OF ALL FOR SOME REASON DOCTORS REFUSE TO BELIVE THAT PATIENTS HAVE HEAD ACHES AFTER SURGERY WELL I CAN TELL YOU I HAVE, NERVE PROBLEMS, CAN'T STAND SOUND AT ALL, FATIGUE( I SLEEP SOMEDAYS 18 HOURS I JUST CAN'T WAKE UP) I HAVE ONE HAND THAT SHAKES OFF AND ON, ONE EYE THAT DROOPS DOWN TO THE POINT IT LOOKS CLOSED, DEPRESSION, AND TOO MUCH TO LIST BUT THE WORST IS PANIC ATTACKS. JUST THREE YEARS AGO I WAS CARE FREE DOING ANYTHING AND EVERYTHING I WANTED NOW I WATCH EVERYONE ELSE LIVING LIFE, I COULD ACCEPT THIS BETTER IF I HAD A DOCTOR THAT SAID I UNDERSTAND HOW YOU FEEL, BUT ALL I GET IS THIS HAS NOTHING TO DO WITH THE SURGERY. THANKS FOR LISTENING,
GARDNERGANG103
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Gardnergang103,
I am glad that you feel that you can vent here - you really need that outlet. I can feel the anger and hurt in your post and hate that you haven't found a physician that can relate to what you are experiencing. If at all possible, I would keep trying new ones until you find one that acknowledges your situation - whatever the cause - and tries to bring you some peace. Just because it "has nothing to do with the surgery" doesn't mean you don't want relief!
I am still pre-surgery and find all of the information that fellow AN'ers have shared to be of great comfort - the good, bad and the downright painful posts. Hang in there and perhaps someone in your area can provide a referral.
Sanddollar
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I had my surgery in Oct.02. I had 2 seuzures, a stroke, went in a coma for 6 weeks, pneumonia, I had a feeding tube in my stomach, a trake also. I was in ICU for 2 months. In the hospital for over 3 months. I came home in a wheelchair. I had to learn to drive all over again. Take a driving test again. They were looking for a nursing home for me. Thats scarry. I'm fine now. Balance problem, memory problems, etc. I got it all but I'm happy and getting along fine. I used to skateboard and ride bikes and play ball and everything and I can't now. I have a Denise Auston CD. I used to laugh at the beginning of it, the stretches. Now thats my main work out. I'm alot less limber but life is good again. the cakes 46years old
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Well, I guess I'm doing pretty good, but I truely believe Doctor's all of them rarely believe you when you say Headaches, head pain, Mrigraine's, Rush to Buzzing sound, memory loss, and Weakness. I thank GOD every night that I can still work and keep my insurance. Some days it's just hard to even get out of bed and other days I can't weight to get home to lay down. IMO these are NOT other side effects of AN Surgery they are the side effects.
I agree My heaing is better, but in a bad way like it magified. Noise even at low levels makes me creak. I can't tell which way sounds are coming from. The dog will be barking out side I will go to the wrong side of the house about everytime. Somebody at work will hollar I got a phone call and I look the wrong direction 99% of the time and can't tell where the sound is coming from. I can't tell which way cars are coming down the parking lots, I afraid I going to get ran over, so I stop and look before I step out. I where a ear plug 90% of the time in my good ear cause I can't stand any regular sounds in the house, in the car, at work, and sometimes just outside. Even the Clock sounds like a bass drum sometimes. So hearing is now where near normal or ever will be. So I can see where some of us are not the nice little trooper we use to be! How may can stand the TV/radio over three bars? when the furnance kicks on you can't hear the TV. any louder and it makes my AN side BUZZ.  Even taking shower make my ear buzz. :( Now how about the other side effects?
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I think this thread should be required reading for all AN docs out there. These are the side effects that are the reality for some patients. They need to have more empathy for all of us.
Rc - I hope things do get better for you over time.
I am the OP and I can say that now at 21 months post op I am doing better and I am more accepting of my new normal. But I am still not who I used to be.
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Hi Pembo,
I totally agree with you. All the assurance from the doctors before the surgery are all lies. I feel i can never be the same as before ever again.
Prior to my AN surgery in Nov 2005, i had undergone an emergency surgery for my appendix which burst. It was life threatening of course, and i had gone through lots of pain for the incision on my lower abdomen. Just 2 months after my appendectomy, i was told that there was a growth in my AN size after an MRI & would need to get the AN out as soon as possible. I undergone the 2nd major surgery within a few months.
Forgot to mention that i had wound infection on my appendectomy right before my AN surgery.. that makes me hospitalised 3 times in a row.
Just as i thought things would be better after my AN surgery, i lost my hearing in both my AN ear & my good ear!
No one could deduce what went wrong, until now, 3 months post op, after an ABR test was done on me. I was told that i had cochlear lesion in my good ear. ( damage of hair cells in my good ear ). I lost 45% of hearing in my good ear & lost total hearing ability in my AN ear.
Now, i have to use a hearing aid on my only surviving ear. with the hearing aid, i could only achieve 85% of hearing, not 100%.
Besides that, i also have facial weakness, imbalance in walking. Life was not the same anymore..
Everything changed. I changed from a normal healthy person to an almost deaf person who has to depend on hearing aid for the rest of my life.
I am only 26 yrs old... i cant imagine losing my hearing totally one day.. that makes me a handicap then.
I try to comfort myself by telling myself that these are the sacrifices i have to make if i want to keep my life.
(The AN was almost pushing on my brain stem before my surgery)
Though not as the usual self anymore, i feel that i have to accept this no matter what.
Life has to go on anyway.
One good advice is to Love yourself more than before, your body had suffered so much.
Live life to the fullest everyday, be strong.
Be optimistic!
Rgds,
Shanne ( Singapore )
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Hi Pembo
I had my operation Jun04 3.5cm and I lost hearing on right. I had CSI leak from ear operation again Sept04. Leak from nose again operation Mar05. Fortunatelly my doctor said too many things before suregery so I waited the worst. I still have little dry eye, one cries and is like Hitler no feelings. For good it had fluid just for own inside use.
Anyway life changes after loosing hearing a lot. You common word is 'Sorry I did not hear', 'What'... But anyway we are life. As doctor explaned me my tumor was going inside towards the brain. One day I could have been found dead without any reason.... So try to find more positive things! Like they say:
'Positive thinking goes like this. A little bird in the sky. U look up & it ****s in ur eye. U don't mind & U don't cry. U just thank GOD that cows don't fly!!!' I got this msg to my phone after my 1st surgery and when I feel that things are not going well I just read it again. Always there is more worse things... Like cows!
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Ansurvivor, I had my operation on Oct.02 and I to suffered a stroke, 2 seurzers and was in a coma for 6 weeks. 3 months in the hospital. Had infections and all kind of stuff. I don't remeber one once of pain, probably since I was in a coma. Still to this day I've had not one headace. I am deaf on the an side. No drouping face though. Never the less I think the surgery was a sucess, it just took the long way around. Could you give me a web site for strokes?