Had consultation at HEI today.

[CHD63]

Mike .....

Glad you have made a decision.  That is a big hurdle.  You will be in good hands with Dr. Brackmann.

Re:  the balance test ..... although you could ask for one now, it would not be of much value until after you have recovered from surgery since things will change somewhat.  Many AN patients have little balance issues post-op because their brains have already been compensating for a poor or non-functioning vestibular nerve.  However, many others have significant balance problems post-op until their brains adjust to having only one vestibular nerve.  Because of your line of work, you may want to ask now about vestibular rehab following surgery so that it is already in place.

My situation is more unique than most because I have no vestibular function on either side.  I spent months in vestibular rehab with great success.  I have climbed ladders to paint but only very carefully (in my case).  You should be able to resume your normal work once your brain adjusts.  Walking and vestibular rehab speeds up that process.

Be sure to let us know when you are scheduled for surgery.

Thoughts and well wishes.

Clarice

[loose screws (tightened)]

Thanks TW. Clarice; Unique is an understatement. The thing that scares me more than anything is having only one functioning vestibular left out if fear of, if something happens to the other vestibular I won't be able to walk or do anything. Well you just told me otherwise. I didn't think it was possible to balance without a functioning vestibular. Wow, I learned something today. Come to think about it I've learned a lot since being diagnosed.

Thanks Clarice
Mike

[Cheryl R]

Mike, I am another no balance nerves due to being NF2 and surgeries on both sides.   My last surgery was that other side time and will be 18 mo ago Sat.   I was very nervous before it as was not sure how much problem I was going to have.     I had asked if one has ever compensated already and got no answer from my dr.    I surprised myself and everyone by getting up and walking like I had never had surgery.     Inside I am ok but outside do have some issues.       I have more problem with walking outside in the large open areas for long times. The all day at our state fair isn't as fun anymore.      Anything slick is a real problem but since you live in Calif you may have less winter issues than the midwest.       The dark is a problem too. Also areas with slick shiny floors.   So anyway one can have a decent outcome but think it varies just like those with the one sided balance loss.            The odds are that it won't happen to you!                                     Cheryl R

[loose screws (tightened)]

Cheryl R, sorry to read about your loss of both balance nerves. On the bright side it does look like your getting around good especially if your able to go to the state fair. You didn't happen to stare at one of those rides that spins upside down while your standing did you? I get dizzy watching those. I guess I just won't worry about things like that now. Actually I could say it's more of a what if concern then a worry. Thanks for reply.

Cheri, Dr. Brackmann recommended the middle fossa. I just quickly read through your thread,very interesting. You got the video of your surgery? Thats cool I wonder if they do that for all surgeries? I'd like to have one. Congrats on your 1 year post.

Mike

[Cheryl R]

Mike, I am a good worrywart and did find in time that the  "what if" was a good way to put things and realize that most don't happen.        Occ it does, like finding out I had NF2 which is rare and was not until I was an older adult also.         
    I don't think I would like looking at such a carnival ride.         Even walking thru the carnival area is interesting as it is always crowded and have different hoses and lines taped to the ground so you have to be very careful walking even with a decent balance.    Plus noisy to boot!     Lots of noise is not our friend anymore but you put up with it anyway. 
               Life does go own and you just have to see what the annoyance of the day is going to be!              Cheryl R

[Mickey]

Hey Mike! Seems like your AN as small but bothersome. You are a young man and Although I am W+W I definately support your decision. Alot of good choices with today`s technology so why not get rid of the bugger at an early stage. In my case 15 years older I`m hope my little friend has reach maturity. Best Wishes, Mickey

[alicia]

Hi Mike - I am chiming in very late, but I wanted to be another House Alum that reassured you that you are in good hands.  The first few weeks of the diagnosis are tough - then you realize this is just the next thing you have to cross off your "to do" list!  It definitely slows you down for a bit, but it makes you appreciate everyting that is right in front of you!  Keep asking questions and take a deep breath!  Alicia

[kristin]

Hi Mike,

I'm posting this on the eve of your surgery, so I don't know if you'll get it or not..

I had my left vestibular nerve cut too as my tumor was all around it. I woke up in ICU very, very dizzy (it made me sick). They tried to get me to sit up and I thought I was going to fall on the floor. But...that got better and by that afternoon I was able to sit up and the next day I could walk (with help) and not feel like I was going to fall over. My surgery was on a Thursday and I was discharged by Sunday and went to a Mariner's/Angel's baseball game on Monday!! (with a TON of help!) My surgery was in April and that summer I tried playing softball. I could hit ok...but when I ran it felt like the earth was shifting. I was afraid of the ball when it was hit to me as it moved so much I couldn't see which one was the real ball. But...after time, it got better! And by the end of the summer..it was almost back to normal.

My biggest problem is when it's dark and I can't see. My doctor told me that balance is a combined effort of three things....sight, inner ear & the vestibular nerve. If it's dark and I happen to lean my head to the side or have a cold or something....I go way off balance. I think that can be helped with vestibular rehab though.

I think you will be just fine!

Kristin

[Jeff]

Hi,
I have nf2 and have had tumors removed on both sides. Thus, both cochleas are gone and both balance nerves severed.I can still walk, but have to be careful in darkness or on uneven terrain.

As I understand it, balance stems from sight, feel, and our internal balance mechanism. Loss of one facet causes us to rely on the others.

I have had three surgeries at St. Vincent. My brother sees Dr. B and likes him well. I see Dr. Friedman, who is great.

Please know that loss of both balance nerves does not mean that you won't be able to walk. I can even run.

Please takr care,

Jeff