The other side effects of AN Surgery

[kjung]

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

[Vincent87]

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.

[wanderer]

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.

[David707]

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)

[gardnergang103]

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

[Sanddollar]

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

[thecakes]

   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

[Rc Moser]

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?

[Pembo]

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.

[shanne]

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 )

[Katja]

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!

[thecakes]

   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?