Survey on Surgical Hearing Preservation

[Captain Deb]

When I had my surgery at HEI in 03, they gave me a 70% change at retaining useful hearing post-op--no such luck for me!  The docs said the nerve was left intact. I think the numbers the docs throw out there are pretty unrealistic for microsurgical hearing preservation.  Would like to know how many out there were able to retain useful hearing following mid-fossa or retrosigmoid or any other approach and how many lost their hearing.  This does not include trans-lab--which definitely sacrifices the hearing.

Just curious!
Capt Deb 

[matti]

Great question

My hearing was perfect prior to AN surgery, so my surgeon opted for the middle fossa approach. They ended up sacraficing the hearing nerve to try and preserve the facial nerve, which was severly splayed by the tumor.

matti

[vcschaub]

I had middle fossa at House in Nov of 05. My hearing was preserved. I am very fortunate.

[Battyp]

I had retro and had very minimal hearing before surgery due to being misdiagnosed the 6 mos before.  I have nothing left in my left ear.  I had some right after surgery but it's diminished since.  They basically told me not to expect any remaining hearing due to my tumor size and the concern was on facial preservation...

Oh boy guess I better up date this eh?  I have a very miniscule amount of left sided hearing that just came back at 8 mos post op.  It's enough to take away that wonky headed noisy room can't find location of sound problem but not enough to talk on the phone in a room with any type of noise )

[russ]

Dear Cptn.Deb
  Stats given are merely indicators of potentials. There are no guarantees with any Tx type, to include radiation.
  Drs have found patients to demand statistics so they are given.
  I'm sorry to read your outcome and the other reported adverse outcomes.
  One might say, however, the AN is gone which would not be the case if irradiation were first line Tx choice. Mid Fossa and FSR hearing outcome stats are very comparable.
  Russ

[kill_bill]

sorry I am new here
could you please explain me, if tumor is on the left side,(1.0 x1.5 x 1.1)  so, after operation you might lose hearing in one left ear or in both?

[Battyp]

Kill Bill it depends on your choice of treatment and how much hearing you currently have in your ear.  Translab you will definitely not have any remaining hearing as they remove the hearing nerve, bones etc...mid fossa retro you could  have hearing left it depends on the skill of your surgeon, how much hearing you had priort to surgery and how much nerve damage is done from the tumor.
Have you  had any audiograms done to determine your hearing status now?  Do you have tinnitus?

If my comment is off the mark someone let me know!

 

[kill_bill]

actually my brother 13 y.o  (03.31) vas diagnosed by MR -AN ...

I am verry upset, doctors said that surgery is very dangerous. Size of his tumour 1.0 x 1.5 x 1.1  cm
I know just very little about this tumour, just collecting information...
one doctor offered monitoring... then neurosurgeon offered surgery, tomorrow we will go to another neurosurgeon for another consultation...
my brothers symptoms were about in january he had reduced hearing in his left ear, and a bit tinnitus, and after about a month those symptoms gone, but doctors  first  made audiogram, then CT, after that MR and confirmed that it is vestibular schwanoma ....

I just dont understand whats the reason of that tumour... why it appears??? 
sorry for my english mistakes, I am not from USA

[Battyp]

Kill Bill where are you from? 

My son had a friend in school this year who had surgery for an acoustic neuroma.  I'm not sure of the particulars as she has surgery about the same time I did but know through him she is having problems.

Any surgery is dangerous and depending where, or what the tumor if involving it hightens the risk.  Is radiosurgery a better possibility?  Have they mentioned gamma or cyber knife as a possible treatment option?

I don't think anyone knows the why it appears unfortunately it does.  I'm sure my tumor was there when I was younger it just was such mild symptoms and intermittent symptoms that I didn't pay attention to them.  It didn't become a problem for me until I was losing my hearing, had tinnitus and was walking into walls.

[kill_bill]

I dont understant if he will be able to go to school after surgery? able to smile, to do his usual writing,cycling, runing or swiming?
Does that mean that his life is broken??? 
no doctors didn mentioned the radiosurgery. Just my mom is getting crazy these days because of this diagnosis 

[Battyp]

NO his life is not broken, just different.

First off tell your mom to settle down which I know has to be hard. 

Second how old are you?

Third, in all honesty an's affect everyone differently.  Speaking for myself...I have difficulty writing as I leave out letters in words.  My tumor was on my left side and I write with my right.  It is possible to retrain either hand.  I can not run but then again I'm also 41 not 13.  I couldn't run that good before my surgery     I don't see why swimming would be a problem but I don't know your brothers total history.  I do know that I would make sure he has a swimming buddy to help watch out for him which is safe regardless of AN or not.  There are those on here who I'm sure have ridden a bicycle or motorcycle  since their diagnosis and treatment.  I am not one of them and do not feel right now I'd be very successful but then again it is not something I did before surgery either.  I have bad knees so bicycles are out!

A girl at my son's school had an acoustic neuroma and she is about 16. My son said she is doing well back at school but does have problems with her short term memory since her sugery a a few months ago.  She is walking better than I am and seems to have bounced back since her surgery last november.

Big hugs to your family!{{{{{{{{{{{{HUGS}}}}}}}}}}}}}  I know this is definitely a trying time for everyone!

[kill_bill]

I am 27 
and for example afer surgery afer some time will he became again the same as he is now- looks totaly healthy or any symptoms will last all his life?
thank you for hugs 

[Battyp]

I myself had retrosigmoid surgery and I look normal.  I did not have facial paralysis but facial numbness so everything works ok I just don't feel it.  My scar is covered by my hair.

My son said the girl at school looks just like she did before surgery other than she's a little unbalanced when she walks but will improve over time she was just a few weeks post op. 

Depending on what happens during surgery he might have some life long symptoms like balance problems but...he's young and should compensate.  I'm not going to pat you on the head and say everything will be a piece of cake because I'd be lying because I don't know.  Eveyone has different problems, outcomes with no rhyme or reason to size of tumor or left or right side of tumor. 

I know your poor mom must be beside herself with worry.  I know mine was and I'm an adult.  I know if it was my son I'd be a basekt case! 

[Captain Deb]

Kill Bill, 

No your brother's life is definitely NOT broken!  I am 53, had about the same size tumor, and I run 3 miles on a treadmill, swim, work and have a pretty normal life except I have no hearing in my AN side ear which is annoying, but not a big deal, really.  A guy I was in the hospital with just ran his third marathon and his tumor was considerably larger than mine. A lot of the outcome is based on where you are able to get treatment.  Where are you located?

Please reassure your mother that this disease is not necessarily disabling and that a great deal of us lead productive healthy lives post-treatment.

Capt Deb

[Battyp]

Deb to answer one of your questions Kill Bil's brother in in lithuania...

makes you want to just go hug the little guy!