ANA Discussion Forum
General Category => Inquiries => Topic started by: Kiwi Don on October 05, 2009, 11:46:36 pm
-
Hi to all the good folk out there, I have been been lurking in the background for several months now trying to gather information and get my head around this subject and I think I have finally found the right place, so a "BIG HI" from the not so sunny South Pacific, yes we do get snow (splenda) down here.
A quick background on me, joined the Navy in '74 left in '06, yeap it's short, I don't want to bore you, been most places, and go back to some.
Well my journey started 10 years ago with an MRI to try to find out why I had developed significant hearing loss in one ear, thankfully it was attributed as Noise Induced Hearing Loss, Too Many Noisy Bars While Overseas I suppose and nothing to do with the job, Yeah Right!!.
Anyway a couple of years ago I noticed I had developed tinnitus in my left ear, it was strange that it was at a lower frequency that my right, alarms bells should have started then, but no I let it go. Finally after complaints from "She Who Must Be Obeyed", off I went to the audiologist. After the new tests and reviewing my previous results it was not long before I was was back in the Clanking, Buzzing, Whirring Tube again, used the usual joke with the staff after the scan "anything in there", the response was muted, second bell.
Yeap, I got a hell of birthday gift this year, the day after I turned 52 the news was out, an AN 20x19mm just touching the brain, and like most I didn't even know what an AN was, let alone what to do about it. Straight home and on the net, big mistake, the first sites I found were the "Doom and Gloom" Stories, then all the techy Data, forget the AN the brain was in overload. Took a week to sift the wheat from chaff, soooooo here I am, and once again "HI"
Met my ENT Specialist three weeks ago have gone through the options, and due to see the Neurologist tomorrow so I thought it was time to come into the light.
Don't know how to finish this so I will leave it there, will post after the appointmet tomorrow.
-
Hi Don,
Welcome to the forum. There a few gloom and doom stories, but there are lots of good outcomes too. In your size range the odds are pretty good that it will work out well. Things won't be quite the same as before, but the new you will still have lots of good living left to do.
Fill us in on the results of your first appointment. There are lots of people here who will offer information, suggestions, and support. Ask anything you like.
Steve
-
Thanks Steve,
I can now look forward to continuing the journey with support from afar.
Don
-
Hi Don and welcome to our family
JO
-
Don,
The good news is that you have found a great place full of warm, caring people. And, as Steve mentioned, plenty of success stories to be shared. Welcome aboard sailor!
- Dennis
-
Hi, Don. Welcome to the wonderful world of ANs - and to the Forum ;D
You've got a great attitude and I love the quote in your profile!
I'm not a doom and gloom story - and there are numerous others here who aren't either. I'm confident you came to the right place.
With an AN your size, radiation is still a possibility. Do they do that where you are? Or is your only choice surgery?
Jan
-
Welcome from a Navy Wife, Don! Noisy bars while overseas???? I'm sure my husband has no experience with that! :D
I think you'll find very few doom and gloom stories around here - more like "we'll get through this together" stories.
Good luck with your upcoming appointments! Keep us posted.
Lori
-
Adding my welcome to you, Don .....
Sorry you found this Forum by way of having an AN, but glad you felt comfortable enough to post during the pre-treatment decision phase.
Even though I had a very positive, uneventful treatment and recovery, I lurked on this site for months, mostly post-treatment, and wished I had jumped in much sooner. The current group of posters are for the most part up-beat and a terrific support!
My best wishes and thoughts as you walk this journey!
Clarice
-
Hi, Don ~
Let me add my welcome and reassurance that while an acoustic neuroma diagnosis is no fun at all, the tumor is almost always benign and quite treatable. Yes, some AN patients (surgery or radiation) have a tough time and some complications - but many do just fine. Some do very well. I'm one of them - and I post here as an encouragement to folks like you that are just beginning their 'AN Journey'.
As you've noticed, there's not much 'doom and gloom' around here. Those are things to be conquered, not encouraged. Mind you, we're totally supportive but we're realistic - not everyone does great - and we refuse to wallow in self-pity. We encourage on a practical, realistic basis. No sugar-coating of the 'dirty lowdown' (apologies to Boz Scaggs) but we celebrate even small victories and encourage patience and a positive attitude, which can go a long way when dealing with this particular benign tumor in our skull.
I'm sorry you have to deal with an acoustic neuroma but pleased you found the ANA site and the forums. We stand ready to inform, help and support you in any way we can, Don. Thanks for taking the time to join and post. I look forward to exchanging messages with you and following your personal AN Journey.
Jim
-
As you've noticed, there's not much 'doom and gloom' around here. Those are things to be conquered, not encouraged. Mind you, we're totally supportive but we're realistic - not everyone does great - and we refuse to wallow in self-pity. We encourage on a practical, realistic basis. No sugar-coating of the 'dirty lowdown' (apologies to Boz Scaggs) but we celebrate even small victories and encourage patience and a positive attitude, which can go a long way when dealing with this particular benign tumor in our skull.
Don -
I couldn't have said this any better. We use a lot of humor on the Forum, but we definitely don't "sugar coat".
Jan
-
Howdy from Texas, Don!!
You have already received a great welcome so sit down & make yourself at home here!!
K ;D
-
Hi Don...Welcome.
I too found out on my birthday 42nd!Had mine for 10 years plus thinkin inner ear infections,then meniers disease.MRI showed
An.....two months later it was surgery.Its out.....its all gone.....No facial issues...Your in good company....take a seat.
I was thinkin the hearing issues were from the 400+ rock shows i attended from age 14 to 42!
-
Welcome! Ever notice how the bad news makes more and faster appearances than the good? Here's some good...We're all alive and working with it.
-
Hi Don and welcome!
Yes we are for the most part "up beat", and some a little "beat up" but not letting it bring us down. :)
The support is tremendous, and we are there in good and bad times.
Tons of success stories. They then fade away, so a lot of the posts are those where little things creep back up, but nothing you can't handle.
What's it like down under? You should be getting ready for spring now?
Welcome again,
Maureen
-
Hi Don and welcome. I see I'm late joining in on hello's but glad to have you here. Thanks for sharing the beginning stages of your AN journey and please keep us updated on how your appt goes. As you've learned, we don't sugar-coat anything around here but.... the support is a major plus! Everyone helpful and cheering you on.
Looking forward to further updates. Hang in there.....
again, welcome.
Phyl
-
Well I met the Neuro on Wednesday, must have come through the same school as many out there, he's a Fellow of the Royal Australian College of Surgeons (FRACS) what ever that means, anyway he is by far rhe most practiced surgeon in Auckland, he didn't have much to say so I had to squeeze everthing out of him. The good thing was he told it as is and gave all the options available in NZ.
I had sort of made up my mind before going in of what I wanted but this sealed the deal, so it looks like they are going to do a Translab, there's not much hearing left in the left ear so it's not worth trying to save.
I am down for surgery in 6-8 weeks, dependant on the hospital schedules so won't start hold my breath yet, at least it's a time line.
Don
-
Don -
well, you definitely want someone with lots of practice, so it sounds like this doc is the way to go.
My neurotologist is the type who tells it like it is - and while I initially found that quite frightening, in the end I realized it was the best approach for him - and me. I wouldn't have wanted any "surprises" that I didn't know were possibilities going into the surgery.
My surgery left me SSD (single sided deaf) and I opted for a BAHA implant - which I am very fond of. I don't know if this option exists in NZ, but if does, you should try a demo post op.
Jan
-
Jan,
Once again you are on the button, on meeting the ENT Surgeon Last Month he was all for the trial and and the possibility of of a BAHA.
Initially I was looking at BiCros aid but the BAHA definitely sounds a better option.
Watch this space.
Cheers
Don
-
Hi Kiwi, sorry you have to join our group but sounds like you are doing very well with it. The tinnitis is horrible, did your surgeon say that will improve? We have another thread going on deviated septums would you happen to have one of those too? LOL at She who must be obeyed...too funny. Best of luck with your surgery
-
Hi Don--
Checking in from NJ, a little belatedly! Sounds like you are moving forward with things. Like Jan said, experience is the key in choosing a surgeon - and it sounds like you've found the right guy. Don't hesitate to get all of your questions answered. I probably drove my surgeons crazy before my surgery with my relentless and endless questions - however, they patiently and thoroughly answered each one. I am one of those people who likes to know all the possible outcomes ahead of time, so I feel that I went into this as well prepared as anyone. Consequently, even though I had a few complications, nothing every really shocked or derailed me.
Sounds like "she who must be obeyed" :D is a wise woman! Having a good support system is key.
Let us know how we can help, okay?
Debbi