PRE SURGERY AUDIO TESTS

[DFF]

I HAD NEAR PERFECT HEARING UPON DIAGNOSIS 2 MONTHS AGO.  UNDERWENT A BATTERY OF AUDIO TESTS ie. EEG, ABR, EQUITESTS, ETC.  ALONG WITH THE REGULAR TEST WHEN YOU SIT IN THE BOOTH WHICH SHOWED NEAR PERFECT HEARING. THE EEG AND ABR TESTS WERE ABNORMAL  INDICATING THAT THE BALANCE PORTION OF VIII NERVE WAS SHOT (NO DIZINESS WHEN COLD WATER PUT IN EAR.)  AND THE ABR SHOWED NO RESPONSE AFTER WAVE 1 ON  SIDE WITH TUMOR.  ABR IS THE ELECTRODES ATTATCHED TO MY HEAD. THE EQUITEST SHOWED MY BODY AS COMPENSATED FOR BALANCE LOSS.

I ONLY PRESENTED WITH  FACIAL NUMBNESS SYMPTOMS. AND HAD AN MRI. 

 NOW I HAVE LOUD OCEAN WAVE SOUNDS IN MY EAR AND REDUCED HEARING. 

I WANT TO BE SURE HEARING LOSS IS CAUSED BY NERVE DAMAGE AN NOT JUST TUMOR PRESSING ON NERVE.  MY AN IS ALSO PRESSING ON THE BRAINSTEM.

I AM QUESTIONING THE APPROACH.

PLEASE RESPOND,

DFF

[Kathleen_Mc]

DFF: The way I see it you need this tumor out now and likely the surgeon should be the one to say which approach is the best, he needs to ensure he gets started at the brain stem I would presume in case something prevents him from getting it all in one shot you shouldn't have the tumor pressing on the brain stem left in there until another surgery can be done, more likely if anything should be left to the end of the surgery it should be the part in the ear canal I would think. It's funny, I never once questioned what approach the doctor should take etc. when my tumor was first found, it was very close to the brain stem and the only concern was that I would survive to get off the O.R. table. I was told if it wasn't removed I would not survive long either and that was that, I trusted the neurologist that picked the neurosergeon and I went with it. I wasn't in any state to question anything. I heard the words "brain tumor" "brain stem" and my chances of survival out of the mess and that was about it. I don't even remember signing the O.R. papers. I waited by the phone for 2 weeks basically 'cause if there was a cancelation I was #1 to get the day and that didn't happen and I was in the O.R. within two weeks of diagnoses.
I presume many of the member here are living in the U.S., maybe because of the way you health care system is set up you all question the doctor more? I think I less question that my doctor is doing what is best for me than many but I certainly have more knowledge than the general public and maybe that's why I don't feel the need to question??
Kathleen

[wanderer]

If surgery is your choice,  then house is the place.


I would imagine they would want to do translab as you already have facial never problems so they would want to have a clear field and the best visual of it.   Also since your hearing is now effected  it may no longer be a a major factor in the decision on the approach.

I prefer losing my hearing to facial paralysis.   I have dealt with both.  the loss of hearing was an annoyance,   the lost of function on have my face was a problem.      both can be dealt with but I would take the option that allows the best chance of facial nerve preservation and that is Translab.    After my surgery I was home in two days and feeling fine,  just a bit tired.   

Good luck to you on your decision.    I hope you get the best results.

[Boppie]

check this ....aren't the balance, hearing, and facial nerves so closely situated that removing the 2.1 cm tumor rules out preserving hearing regardless of the approach?   One assumes the tumor originates in the IAC and extends to the CPA and is up against the brain stem.  Are you thinking of a 2 stage surgery?  Just exploring. 

I had facial nerve weakness and for only a short time...wouldn't take facial paralysis complications as a tradeoff for even 10% hearing in that ear.  Just my opnion.

[wanderer]

I have heard some claim that they may still attempt hearing preservation. From what I understand they are rarely if ever successful with a tumor that large.   

I had a 2cm tumor with brain stem compression and was told that there was no chance of maintianing any useable hearing.      Since my hearing was already damaged I opted for translab.   I ended up with facial paralysis due to swelling which eventually went away.   

chasing damaged hearing is just not worth the higher risk to the facial nerve with the other surgical methods in my opinion. 

[Larry]

DFF,

I suggest you get advice from two of the well publicised places on this board and make sure that all the options are given to you. Whether its surgery, radiation or watch and wait.

Larry

[DFF]

THANKYOU FOR YOUR RESPONSES.  LET'S CLARIFY THE ANATOMY AND PHYSIOLOGY OF THE NERVES INVOLVED WITH AN. 

THE TRIGEMINAL IS THE FIFTH (V) INVOLVED WITH MUSCLES OF MASTICATION (CHEWING), AND  SENSATION TO THE HEAD/NECK, SINUSES, MENINGES, AND EXTERNAL SURACE OF THE TYMPANIC MEMBRANE (FORHEAD, CHEEKS, LOWER JAW).

THIS EXPLAINS THE SYMPTOMS I HAVE OF FACIAL NUMBNESS (NOT FUNCTION), AND TROUBLE CHEWING.

THE FACIAL IS THE SEVENTH (VII) INVOLVED WITH FACIAL FUNCTION (EXPRESSION), AND SENSATION TO THE TONGUE (TASTE), ETC.

OUR FAVORITE, THE VESTIBULOCOCHLEAR (VIII) INVOLVES HEARING AND BALANCE.  ALSO REFERED COMMONLY  AS THE AUDITORY NERVE WHERE THE MAJORITY OF AN's ARRIVE FROM.

95% PATIENTS PRESENT INITIALY WITH HEARING LOSS INDICATING AUDITORY (VIII) INVOLVMENT.  ONLY A SMALL FRACTION  PRESENT INITIALLY WITH FACIAL NUMBNESS (TRIGEMINAL V), WITH NEAR PERFECT HEARING.

I CAN NOW RECALL PAST SYMPTOMS INVOLVING BALANCE  (AUDITORY VIII), ALTHOUGH I ALWAYS STEP LIGHTLY.  I HAVE JUST RECENTLY BEGAN EXPERIENCING TINNITUS AND SUDDEN ONSET OF HEARING LOSS (SUGGESTING AUDITORY VIII INVOLVEMENT. 

MY SYMPTOMS NOT TYPICAL.  SINCE THE DECISION FOR TREATMENT RESTS ON MY SHOULDERS, I JUST WANT TO BE SURE. 

MY SURGERY IS SCHEDULED FOR TRANSLAB AT THE HOUSE WITH BRACHMAN.  LUCKELY I HAVE HAD CONSISTANT FEEDBACK WITH MOST CONSULTATIONS.  I'VE SEEN NEUROSURGEONS AND OTONEUROLOGITS AT THE NEUROLOGICAL INST AND GEORGIA EAR INST IN SAVANNAH, YALE NEW HAVEN BRAIN CENTER IN CONNECTICUT ALONG WITH A NEURO-RADIOLOGIST THERE, AND AT THE NEUROLOGICAL CENTER IN BOSTON MASS. 

AND OF COURSE AT THE HOUSE INST IN CALIFORNIA.

I CANT EAT, I CANT SLEEP.  I AM ALSO SCHEDULED TO RECIEVE A BAHA HEARING DEVICE DURING SUGERY.

HOW DO I CLOSE...THANKGOODNESS FOR THE ANA FORUM, I KNOW I AM NOT ALONE!
DFF

[Larry]

DFF,

You have done your research and committed to a treatment option. Thats terrific. Sounds like you will be in good hands and we will be here for you pre and post surgery.


Larry