SURVEY: Vestibular Nerve Cut? Yes or No.

[LisaM]

Greetings ANers,

Came across a thread discussing cutting the vestibular nerve. 

It seems that are two schools of thought on cutting this nerve during surgery.  Some docs say it is better to cut the nerve as the brain compensates better if the nerve is cut and other docs prefer to leave it intact (if possible). 

Hoping to hear from those of you who have had surgery and know if your vestibular nerve was cut or if it was left intact.  Please note that there are two vestibular nerves; superior and inferior.  ANs usually grow on the superior vestibular nerve hence the name vestibular schwanomma.  It is most likely that the superior nerve was cut... but... THE BIG QUESTION: was the inferior nerve cut or was it left intact?

Another piece of information that would be good for this survey is whether or not your balance was already deficient, prior to surgery, meaning your brain was already compensating for balance (for instance my balance shows only 30% decline so my brain hasn't done too much compensating yet).

Looking for feedback on balance and wonky headedness.  Thank you for your time!

C'est moi,
Lisa M

[Omaschwannoma]

Lisa,
Wanted to reply to your great survey!  Yes, my vestibular nerve was cut, but the doctor left one.  Sorry he never told me which one he left.  A 2nd surgery to correct this and to get my brain to finally compensate didn't work either or rather for long.  My other problem was a hole in my posterior semicircular canal.  Dr. Gianoli in Louisianna performed this surgery and I can finally say "I am cured!"

I did have balance issues before my hearing issues.  This was the reason I did NOT choose having my tumor zapped as I was told my balance would still be a problem so I chose surgery where I had a better chance of regaining my balance.  Took long enough for this to be accomplished!! 

I have to look into my files for the paper Dr. Gianoli wrote and sent me on leaving the inferior nerve and all the problems the brain has in trying to comensate fully.  It is my understanding they leave the inferior because this nerve connects directly to the cochlea  therefore a better chance of retaining some hearing?!  I believe Dr. Gianoli said to me that a survey was done by doctors about which approach they would choose for microsurgery and tumor removal and the doctors chose to have the labyrinthectomy.  Removing the hearing nerve, all of the vestibular nerves, better chance for saving the facial nerve and better outcome post surgery for balance.  Now I know there are people who have had the other approaches with success, but you can't discount what a panel of doctors said who perform these surgeries.  Obviously they see more complications with the other approaches vs the labyrinthectomy.  Just my opinion. 

[germangirl]

Hi Lisa,

thanks for starting this survey. Great Idea!
I personally feel that we could learn so much more, if we would systematically bring together some data.

I am absolutely frustrated, that the post-AN-OP-symptom of "wonky head" (there even does not exist a proper word for this condition) is not known in the medical area. Dr.s will not know what you are talking about, you get in most cases no support at all.
And more important nobody seems to really care what is the cause or how to treat this.

If I use the search function in this forum I find so many who experience the same then me ( with the wonky head and the doctors ) that i am really angry and wish we could change this.

My data for the survey:
Pre-OP: only lightheaded some days
OP: Vestibularis Superior cut, Inferior preserved
Post-OP: serious problems with wonky head whenever i move (resulting in fatigue, sickness...)
accompanying disease: Migraine and motion sickness[/b]

Since Migraine and/or natural propensity (or inclination?, my english..., sorry:-) is said to be eventually responsible for the wonky head after OP, I would find it usefull to gather this information as well.

Thanks Lisa, hope the others follow and share their facts with us

germangirl