Author Topic: Had consultation at HEI today.  (Read 9850 times)

CHD63

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Re: Had consultation at HEI today.
« Reply #15 on: October 13, 2009, 08:11:18 am »
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
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

loose screws (tightened)

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Re: Had consultation at HEI today.
« Reply #16 on: October 13, 2009, 09:47:03 pm »
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
47 Y/O. diagnosed AN After MRI. 4X5X7mm within the right auditory canal. Slight hearing loss, ringing in ear, vertigo. Middle fossa with House Ear Clinics Dr Brackmann and Dr. Schwartz on 11-16-09. 6 new tightened titanium screws but no more hearing.
http://mikessurgery.blogspot.com/

Cheryl R

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Re: Had consultation at HEI today.
« Reply #17 on: October 14, 2009, 09:14:44 am »
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
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

loose screws (tightened)

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Re: Had consultation at HEI today.
« Reply #18 on: October 14, 2009, 01:42:04 pm »
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
47 Y/O. diagnosed AN After MRI. 4X5X7mm within the right auditory canal. Slight hearing loss, ringing in ear, vertigo. Middle fossa with House Ear Clinics Dr Brackmann and Dr. Schwartz on 11-16-09. 6 new tightened titanium screws but no more hearing.
http://mikessurgery.blogspot.com/

Cheryl R

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Re: Had consultation at HEI today.
« Reply #19 on: October 14, 2009, 02:36:08 pm »
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
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

Mickey

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Re: Had consultation at HEI today.
« Reply #20 on: October 14, 2009, 04:03:48 pm »
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

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Re: Had consultation at HEI today.
« Reply #21 on: October 14, 2009, 10:17:03 pm »
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
02/16/18 III to IV post GK Facial Paralysis
12/13/17 Gamma Knife
05/19/09 Translab Larger than expected - Drs used the word "tangerine"   House - Friedman and Schwartz
04/02/09 Diagnosed Left AN 3.2cm x 2.6cm x 2.7cm

kristin

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Re: Had consultation at HEI today.
« Reply #22 on: November 15, 2009, 08:09:09 pm »
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
8 x 5 mm Left Acoustic Neuroma
Middle Fossa
House Ear Clinic
Dr. Derald Brackmann, Dr. William Hitselberger
April 14, 2005

"I have told you these things, so that in me you may have peace. In this world you will have troubles. But take heart! I have overcome the world." John 16:33

Jeff

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Re: Had consultation at HEI today.
« Reply #23 on: November 16, 2009, 07:48:51 am »
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
NF2
multiple AN surgeries
last surgery June 08

 


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