Hi all - another one joins your club

[marjoryb]

Monie -   I, too,  had tons of questions when I was first diagnosed.  Hope these answers help you out.
 
* What were all your balance issues pre surgery?
No noticeable balance issues until a year after diagnosed - then slight dizziness

* How many of you had a tumour confined to the auditory canal?
 Not me

* How many were given a choice between trans-lad and retro surgery and if you chose trans-lab, why?
I was given the choice (size 2.0 cm) and met with several doctors to weigh my options.  It took me about a year to make up my mind.   I ultimately chose surgery (July 7, 2006) because I wanted to get rid of it and felt most comfortable with the doctors that recommended the surgery.

* How many of you have headaches post surgery and on a scale of 1 - 10 (10 being unbearable) how do you rate your headaches now? 
I had post-op headaches and still do.   Until this week they were a 10 - sometimes even a 12.   I was just prescribed a beta blocker that has changed the intensity (and frequency) of my headaches.   Now the pain level is probably a 4 at most and I'm able to sleep through the night and don't wake up with headaches during the night.

* How many of you have a BAHA and what positive effects has it had on your situation? 
No BAHA.  I don't know what I'll do in the future.   I lost hearing but it really doesn't bother me that much unless I'm in crowd (like out at a restaurant) where there is alot of noise.

* If you had surgery, how many of you (given the choice of waiting and watching) would now wish they had waited   
 I'm glad I didn't wait once I started having symptoms.   I am in my best physical and mental shape now and decided I could tolerate the surgery better now than 5, 10, 15 years down the road.  I'm 56 years old, I waited until my last child graduated from high school and was off to college - I was ready.

Marjoryb

[Obita]

Hi Monie:

Me again. 

An answer the rest of your questions:

      -My AN had grown out of the AC and was touching the brainstem so I had surgery 9 weeks after diagnosis.  I chose Translab because my usable hearing was crummy and the location of my AN was such that my surgeons could keep a better eye on my facial nerve with that approach.
      -I had no headaches prior to surgery and never had one after, even post-op.
      -I have thought about the BAHA but I don't want another surgery just yet

Good luck to you, Kathy

[Larry]

Monie,

Radiosurgery is available on a very limited basis in Oz. Sydney and melbourne have old Linac machines - sorta like Gammaknife. However, there is hope that we will be getiting a new cyberknife machine in the not so distant future so unless your symptoms get the better of you, watch and wait.

cheers



Laz

[Gennysmom]

OK, so once again, I'm a day late and a dollar short, but will put my info in and hope it helps!  There are several of you in the land of OZ, so hopefully you can hook up with your mates down there (Laz, Chris, Katmumof3, for example). 

Anyway, here goes, mine was much larger than yours, but I did have translab:

* What were all your balance issues pre surgery?
       I had none....only post surgery.
* How many of you had a tumour confined to the auditory canal?
       Mine was way out pressing on the cerebellum.
* How many were given a choice between trans-lad and retro surgery and if you chose trans-lab, why?
       I wasn't really....they said I could look into retro, but with my hearing almost nil (16% serviceable) they suggested that I not go the retro route because of it's risk for headaches, especially since I suffer from neck tension headaches.  In retro, they have to cut some neck muscle, and that's where the headache issue comes from....translab is done without cutting any muscle. 
* How many of you have headaches post surgery and on a scale of 1 - 10 (10 being unbearable) how do you rate your headaches now?
        I have had nothing other than a mild tension headache not related to surgery.  I'm not counting the headache that I got from pushing a CSF leak test to the limit since that's such a rare issue....not surgically related per se. 
* How many of you have a BAHA and what positive effects has it had on your situation?
         No BAHA...not feeling too excited about a second head surgical site...been without hearing for so long that I've adjusted.
* If you had surgery, how many of you (given the choice of waiting and watching) would now wish they had waited?
         I'm not sure how to answer this....mine was so large I didn't have that choice and kind of feel relief from not having to choose.  It took some of the stress off of me.  I think if I had the choice I'd wait a bit and do some more research and go with what felt right for me.

I have had tinnitus for years....surgery did not make it any louder or different.  The feeling I have is that my ear is a little clogged up, but not echo-y....a little dead feeling, except for the tinnitus. 

Good luck on whatever you choose to do!