Any questions about an acoustic neuroma surgery? (50 yrs. old;surgery @29 yrs.)

[vjgfamily]

Hi.  I had acoustic neuroma surgery 20 years ago.  At that time (1988), the surgical procedures were in their infancy, but I found the best doctors possible (Los Angeles).  The doctors in Oklahoma (Tulsa) had only done a handful of these surgeries, so I found a couple of more experienced ones in LA.  I was young, and my recovery only took about 6 months...although I still live with repurcussions.  But, I'm living well........and you can too.  Let's talk.

Verl


Hi Verl and welcome! I had to delete your personal contact info since it is not allowed here publically, for  your own protection (ie: spammers, phishers, etc). Folks can PM/email you here on the site where you can share personal info... thanks for understanding... and thank you for sharing your story with us!  Great to have you here.. and again, welcome! Phyl

[vjgfamily]

Also, from my personal experiences, I can discuss the following:

Symptoms
Surgery
Recovery

...and anything else.

Thanks,
Verl

[vjgfamily]

Also, what is BAHA?

[Boppie]

Verl, How often do you have checkups?

[vjgfamily]

I had a checkup 5 years after surgery, so....15 years without a checkup

[vjgfamily]

Correction....I had a checkup 1 year after my surgery,then another 4 years later.  No checkups for 15 years.   I haven't felt the need to.

[Jim Scott]

Verl:

Hello and welcome.  Although we're well versed in all aspects of Acoustic Neuroma by virtue of our collective experience, we're always open to learning more. 

AN surgery has made vast advances in 20 years but I'm pleased to learn that you've done well and have a full life, post-surgery.  I had AN surgery then radiation two years ago and am living a very normal life, too.  I'm always pleased to see other AN surgery patients who did well following their surgery 'back in the day', when many patients didn't always do so well due to a lack of knowledge on the part of the medical community in regards to treating patients with an acoustic neuroma.  Thanks for offering your experiences. 

BAHA is an acronym for Bone Anchored Hearing Aid.

Jim

[vjgfamily]

Thanks for the info Jim.  You are correct, there were many dismal outcomes for AN surgery, back in the day.  I was one of the lucky ones.

Did you know that nearly 50% of people that die of natural causes have an acoustic neuroma in some form/stage?  I was told this by a neurosurgeon.

Verl

[jazzfunkanne]

Hi Veri, my consultant told me this as well , thats what makes me think ANs are more common than people think.
How was your AN picked up on, and what size was it, what route did they take then, and was your facial nerve damaged. annex

[vjgfamily]

My tumor was golf-ball sized.  Before diagnosis, I had some hearing loss and lots of tinnitus (ringing).  That's what caused me to see a doctor.  Post-surgery, I lost 15% of my facial nerve.  But it is only noticable when I'm really tired.

[MAlegant]

Hi Veri,
What side effects do you still have?  And thank you for chiming in; it is wonderful to hear from people so far removed from their surgery and to know they are doing fine. 
M

[vjgfamily]

I lead a fairly normal life, and I know how fortunate I am.  Every day is a gift.

I have no hearing in my right ear.  I have "ghost" sounds...a kind of buzzing...but I can usually ignore it.  My good left ear seems to be holding up okay...in fact, it seems more sensitive than ever. 

When I'm very tired, my wife notices that the right side of my face is slightly droopy (half-smile)....but nothing I even notice.

I can't believe that 20 years have passed since my surgery.  Pre-surgery, I remember hoping and praying that I would see my next birthday.  In the meantime, i've raised 2 kids, and I feel blessed and lucky to be alive.

It is so very wonderful to see that this ANA discussion forum exists.  When I had my surgery (1988), we didn't even know what the internet was.  Information was very scarce, then.  This forum is a great blessing to those that are diagnosed with AN.  Keep up the great work, everybody!

Thanks,
Verl

Oh, one more thing....when I walk down my pitch black hallway at night, I always brush into the wall on the right (my internal gyroscope ain't quite right, I guess).

[vjgfamily]

I just thought of one more thing:

I had double-vision pretty bad after my surgery.  It improved SLOWLY for about 8 or 9 months (I did exercises to strengthen the eye muscles), at which time it quit getting better.  After a little more time, I became used to it, and I barely even notice it now.  If I look straight ahead and move my eyes down, left, or up, there is no double-vision.  It's only when I move my eyes to the right that I have double-vision.  But, the body is an amazing thing...whenever I need to look to the right, my head is trained to turn that direction...so my eyes are actually looking straight ahead.   

hope that made sense.

Thanks,
Verl

[vjgfamily]

Cheri,

I remember having numbness on the AN side of my face, immediately after surgery.  It gradually got better, and after a few months, it was barely noticable.  Also, I had twitches in the face muscles on the AN side.  I kept having the face twitches for a couple of years (but my wife said they weren't noticable), but they gradually stopped.  Once in a while, I'll have a facial twitch, even today...but, now I kind of giggle at them.

Your eye muscle will strengthen...just give it time...and exercise it.

It's been so long ago, I don't remember the name of the hospital...but the doctor's name was Pulec...and he was one of the few that even knew what AN was back then (1988).

Thanks,
Verl

[vjgfamily]

Cheri,

Please listen to the doctors before taking ANY of my advice...I'm no expert.  Basically, my eye exercise consisted of forced blinking (open wide/close tight)...mine wasn't too bad.  But the double-vision exercise was just forcing (trying too, anyway) my eyes to focus on something as far to the right as possible without the double-vision kicking in too much.  I think this helped me....but, again, your doctors are the experts. 

I'll look up the hospital name, but my doctor was Jack L. Pulec.  He died in 2004, but his work goes on:
Pulec Ear Clinic
Neighborhood: Westlake
1245 Wilshire Blvd Ste 503
Los Angeles, CA 90017

Verl