ANA Discussion Forum
General Category => AN Issues => Topic started by: vjgfamily on October 23, 2008, 08:57:34 pm
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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
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Also, from my personal experiences, I can discuss the following:
Symptoms
Surgery
Recovery
...and anything else.
Thanks,
Verl
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Also, what is BAHA?
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Verl, How often do you have checkups?
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I had a checkup 5 years after surgery, so....15 years without a checkup
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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.
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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
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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
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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
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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.
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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
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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).
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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
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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
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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
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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
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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
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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 ;D
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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.
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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
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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
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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
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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
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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 ;D
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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
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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!!
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Joef~
WE MISSED YOU!!!
K
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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!
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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