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

[fbarbera]

Hi Very,

Thank you very much for volunteering your time and valuable veteran insights on this forum.  Having more folks like you around here, who can give us the longer term perspective, would be hugely valuable, especially to people like me who were treated recently.  I always wondering what to expect 5 or 10 yrs down the road, but there aren't many posters with that kind of perspective.

In any event, I had radiation rather than surgery and I'm doing very well overall.  My hearing is intact, no facial nerve issues, and the tumor is well on its way to becoming necrotic.  All that remains now is this sensation.  Some people call is "wonkiness."  It's a feeling of slight pressure and slight imbalance in the head that doesn't really impact my daily life, except towards the end of the day, when I'm tired, at which point, I can feel it more. 

I was wondering if you have any experience with this sort of sensation and if so, whether you could share something about it.

Thanks and thanks again for your service.

Best regard,
Francesco 

[vjgfamily]

Fransesco,

I don't really have that "wonkiness".  Maybe because my tumor was fully (i hope!) removed.  I have a "buzzing" sensation in my deaf ear...ever since surgery...although it has slowly decreased in volume over the years.

Hang in there.  Hopefully, the "wonkiness" gets better.  It should.

Thanks,
Verl

[Kaybo]

Hey Veri~
Sorry I am just now getting to reading all of this.  I have a very busy life chasing after 3 girlies (11,7 & 5) - I had all three after my AN surgery in 1995.  I was just a few years behind you - I was only 25!  WELCOME!!

K   

[vjgfamily]

Hi K,

I just got my 2 kid's through college, and I'm just now having time to participate in bboards like this.  I'm surprised you have time to do it!

You are one of the veterans, I see.  I wonder if my surgery is the oldest on this board?  It could be, because my surgeon (who was THE expert in 1988) had done a hundred or so...and I was pretty young, then (compared to how old a fart I am now).

Nice to meet you.

Verl

P.S., some folks are incorrectly spelling my name with an "i", and it should be VERL (not veri).  It's short for VERLYN.  No problem, just wanted to set the record straight.  Thx.

[vjgfamily]

I hope this is informative to someone...I'll keep posting things as I think of them.

For about 6 months after my surgery, I couldn't listen to music.  It sounded wrong!  Kind of echo-y.  I also play alto and tenor sax, and I couldn't play for a long time.  After the sound issue got better, I had to relearn the armature (mouth muscles) for the mouth-piece.  It's a good thing I don't make a living playing sax!

VERL

[vjgfamily]

Demerol...bad stuff.

It was a very useful drug for a couple of days after AN surgery, but then it made me sick.  I still wanted it, though.  After 4 days of demerol, I was addicted to it, and I realized it, thank god.  I just stopped asking for it, and I went through withdrawals (sick for a couple of days).  Back then (1988), they kept you in the hospital for 2 weeks.

Hopefully, nowadays they give you something else.

VERL

[vjgfamily]

Cheri,

I find it odd that your double-vision is on your left.   What a weird thing the brain is, when it can react so differently. 

Another exciting memory I have is prior to surgery, during tests.  The doctor's aide had put some kind of strange electrode in my ears, adn when he turned the machine on, the settings were on max, and it gave me a jolt that almost knocked me out of the chair.  It hurt a lot.  I thought I would snap his neck.  Anyhow, that was fun.

More fact-filled, fun AN related stories to come:
Re-surgery to pack more belly fat into the hole in my head.
Spinal tap, because they thought I had spinal meningitis.
Reaction to Darvon.

Man, I haven't thought about this stuff for a long time....that's good, isn't it.

Verl

[sgerrard]

You are one of the veterans, I see.  I wonder if my surgery is the oldest on this board?

We have a few members in the 20+ year category; CMP (Carrie) comes to mind, who had surgery in 1988, and another just this year for a regrowth. The few, the proud, the AN veterans...

Steve

[Kaybo]

VerL~
Yes, there are definitely others that have been out longer...is it JanD that had surgery in the 60's or 70's - maybe not that long, but a LONG time ago for AN surgery.  I could be wrong, but I think I am one of the youngest to have had one out for that long...What a distintion??

K 

[vjgfamily]

K & Steve,

Thanks for that info.  I'm new on here, and I'm learning all kinds of good stuff.  I regret not coming to this site, sooner.

I'll try to log in later and tell my story about brain fluid leakage and belly fat.  Sounds exciting, I know.

Thanks,
VERL

[Joef]

I'm back after my mini forum vacation!....

Its really great to see adding new members that had surgery so many years ago!!! I hope some day I can pop back in after 20 years!!

[Kaybo]

Joef~

WE MISSED YOU!!!

K

[vjgfamily]

OK, time for a story about belly fat.

I'm not sure how the procedure is done today, but I have a golf ball size hole in my skull, right behind my right ear.  To plug the hole, the surgeon took fat out of my belly and layered it in the hole.  The fat melds with the brain liner (a leathery substance) and seals it.  Today, it feels very hard when I touch it, almost like a real tough leather.

10 days after my surgery, I complained to my doctor that I felt like something was leaking inside and running down my throat (possibly spinal fluid).  But, he couldn't find any.  A couple of days later, my hole sprung and external leak.  Fortunately, they saved a jar of my belly fat (there was a lot more they should've taken while they were at it!)  I went back into surgery, and with a local anesthetic, they re-opened the hole and packed more belly fat in it.  That did the trick.

The weird thing was that I was awake during the procedure.  I kept thinking about my brain being exposed, and here I was, having a conversation with the surgeon.  It was very strange.   But, no more leaks!

My wife loves the fact that we have matching c-section scars.

Thanks,
Verl

P.S., Belly fat in a jar looks a lot like brains!

[Jim Scott]

I'm back after my mini forum vacation!....

Its really great to see adding new members that had surgery so many years ago!!! I hope some day I can pop back in after 20 years!!

Good to have you back, Joe. 

I just realized - if I still visit this website in 20 years, I'll be 85 years old.  Something to shoot for! 

Jim