Getting closer...

[EJTampa]

Hello gang!
 
I haven't posted in a while, so wanted to keep you all updated.  First, we did enjoy the cruise to the Eastern Caribbean the second week of January, but many people became ill from day 3 onward.  I think they said it was the Norovirus.  My dad ended up quarantined to his room for the last 3 days of the cruise .
 
Second...I have had a consult with Dr. Bartels in Tampa.  I have good and not so good feelings about "the team", but I still have time to make a final decision.  I'm told that most likely it will just be Dr. Bartels there doing the surgery, although sometimes a local neuro doc likes to come in and observe.  This is different than what I've heard from others.  They did tell me that I will have a positive outcome because of the placement of my tumor, with a 50 to 60 percent chance of saving my current hearing (100 percent word recognition still, but lost higher frequencies).  They also told me that there are not many places they would recommend to do the surgery, but they did say House was one of them .
 
They do over 50 a year, which isn't bad.  He said 1 to 2 a week.  He said they've done so many of them that they know exactly where to go in, what to avoid, and how to lesson the chances of post op headaches.  They also said that all of their patients who came in with no facial numbness end up with either no, or just brief facial problems after surgery.  That is certainly good to hear.
 
I have 2 appointments coming up for balance testing.  have any of you had to go through this?  My first appointment is this Monday at 1 PM and will take 4 hours to complete.  My second one is next Monday at 7:30 AM and also will take 4 hours.  8 hours of balance testing?  Geesh.
 
That's it for now, but if I decide to use Dr. Bartels, I will have a surgery date in the next 2 to 4 weeks.
 
Ernie

[Pembo]

Why do they want to do balance testing?  The only balance test I had was marching in place with my eyes closed...I thought I never moved and I ended up across the room facing another direction.

[Cheryl R]

I think some drs do the tests and others don't.      I never had any either and don't think I have heard anyone else at Univ of Iowa who did either.   
Every place has their own way of dealing with this whole AN business!
                                                   Cheryl R

[EJTampa]

I think there are two reasons.  The first is general and would be valid for all patients.  They want a baseline to use in the event that I require formal balance therapy.  It gives them a "goal" to get to.  Imagine someone who never had good balance in the first place, going through therapy with the goal being well above what they started with?  That would be a long road .
 
I also think that they believe my balance nerve is largely intact and still being used.  They said they are going to remove it regardless, but maybe the testing in my case is to determine to what extent it has been affected.  who knows .
 
The doctor said that my AN is up against my brain, which brings it farther away from the ear canal.  While this initially didn't sound like a good thing, he said it actually makes the surgery and saving nerves easier.
 
He said my case looks relatively routine, and only expects to be in my head for 3 to 4 hours .
 
Ernie

[chocolatetruffle]

hello ernie
yep, that sounded like my pre-op stuff - mine started at 7.30 am and ended at 4.30 pm, with a series of balance and hearing tests, and meeting with both surgeons on the MRI and the retrosigmoid approach, and meeting with internist on general health checkup.  I was supposed to have the retrosigmoid surgery the next day, but based on the results of the balance and hearing tests, it was decided that i would fare better with the translab approach.  as mentioned,the results are used as a baseline, but i guess it also acts as technical data to re-confirm if the determined surgery approach is the right approach.  It feels like an all day's work but it is worth it, just one of the things that goes into a successful surgery! good luck to you!!

[Jim Scott]

Ernie:

Pre-surgery, I had only basic balance testing, in the doctor's office, walking a straight line then walking heel-to-toe (I failed both tests).  Same thing after surgery; straight line then heel-to-toe in the doctor's office.  It took six months, but eventually I 'passed' this simple evaluation.  As others have mentioned, every doctor & facility does things slightly differently.  Frankly, my doctor was somewhat minimalist in his approach with no special testing before the surgery except for what was required (CT scan, blood work, etc.) and little-to-none, except semi-annual MRI scans, afterward.  Fortunately, I had no post-op complications so special testing and/or rehab wasn't required.  I was fine with that. 

The final decision on doctor and hospital is yours, of course.  If you aren't totally comfortable with Dr. Bartels, you may need to look elsewhere, although I would hasten to add that you don't want to let the 'perfect' become the enemy of the 'good'.   I think 8 hours of balance testing is overkill but I'm not a physician.  I'm simply making an offhand, uneducated observation, worth about what you paid for it.     I wish you a successful, uncomplicated surgery and a smooth recovery. 

Jim

[sgerrard]

Dr. Bartels is famous around here to some of us, because he did the surgery 18 months ago on Adrian, of Samantha and Adrain fame. I think he is good. 

I had vestibular lab testing (not 8 hours, though). It can determine things like how good a shape is the hearing nerve in (based on electrical measurements), which part of the balance nerve is affected, and if so how much, and generally provide more info to the doctors prior to treatment. Every little bit helps.

Hope all goes well.

Steve

[leapyrtwins]

Ernie -

good to see you back; was wondering what you were doing lately.

My balance testing was similar to Jim's - in the doc's office, same type of tests, but a few more than he mentioned.  Although I claimed I didn't have balance issues, after the tests it was quite evident to me - and to the doc - that I was a liar    Unintentionally, I assure you.

I remember Dr. Bartels from his surgery on Adrian (of Sam & Adrian fame), Steve just beat me to the punch 

I don't know if you've ever read Sam & Adrian's posts - or if you've ever contacted them - but it might be something you'd be interested in doing before making your final decision.  As I recall, they were quite happy with him and with Adrian's outcome.

Jan

[EJTampa]

I did read through Adrian's posts regarding Dr. Bartels, which is why I went there in the first place.  My ENT highly recommended them as well. 
 
I have my first 4 hours of balance testing today at 1 PM EST, I'll let you all know how I do .
 
Ernie

[EJTampa]

Ok, as promised, I'm here to let you all know how this balance testing turned out.  First, I must say that both my ears hurt, and the doctor said they look a little angry inside now .  I can't begin to explain all the tests fully, but most involved wearing a heavy mask with various gadgets attached to it.  One test had me following a red light around with one eye while a camera recorded the movement of my other eye.  Then I had to keep my eyes straight ahead, but follow the light by moving my head.  This, at least, wasn't all that taxing.
 
There were of course various balance tests that you would normally think of, such as standing straight and staring at the wall, then closing your eyes.  Did that test in about 3 different poses.  I was amazed at how much I felt out of balance with my eyes closed!
 
I had lots of tests with electrodes attached to my forehead and each side of my neck.  They would play noises into my ear and record the signal that traveled down the nerve that eventually goes all the way to my legs.  The only hard part of that one was holding my head up and looking to the left or right while laying down.
 
The final tests involved putting water in my ears.  First, hot water in my AN ear while wearing the mask and in complete darkness.  She recorded my eye movement, which is supposed to be considerable because of the different temperatures from one side to the other.  I did have some disequilibrium, but not that bad.  When she did the non-AN ear, I felt like I was spinning!  The tests were repeated using cold water.
 
I see the Doctor again next Monday after one more test (not another 4 hours like I thought).  The next test is only 30 minutes, then a meeting with the doctor.  Will keep you all posted!
 
Ernie