ANA Discussion Forum
Watch and Wait => For those in the 'watch and wait' status => Topic started by: melboca on January 02, 2009, 05:30:05 pm
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Hi all,
My name is Melissa and I live in S. Florida. I just got the call that my MRI showed AN. I have been having severe vertigo attacks and after a visit from my ENT dr my latest hearing test showed a huge hearing loss in my left ear. I am considered clinically deaf. I have always had hearing problems since my youth and had ear surgery on my right ear which corrected the hearing problem in that particular ear. We assumed that the problem in the left ear would be corrected with the same surgery. Wrong.
So, my ENT said the tumor is very small and I too am in the "watch and wait". I am on a 6 month MRI schedule.
For me, it's the vertigo that affects my life. It's horrible when I get an attack and it lasts sometimes up to 10 days.
Glad to have found this message board.
~Melissa
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Welcome Melissa,
We welcome you to the Forum, but are always sorry to see another "newbie" in the group. But this is a great Forum and you will find great support and a lot of information on this site. And besides that, we are all really nice! ;) ;D
So sorry you are having balance issues. That's no fun at all. This should resolve itself in time. The brain has to start relying on the other balance nerve to do everything and it takes time. Also there is vestibular therapy if you so choose. And there is just talking again with your doctor, or getting a second opinion, or a third opinion if you have too, and try to work out how they can help you with the vertigo, or perhaps deciding that WW isn't working and that you'd rather be treated for it sooner rather than later, if that's what you so desire.
Hang in there, Melissa.
Sue in Vancouver, WA USA
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Melissa~
Welcome from Texas! Like Sue, I am sorry that you have an AN, but glad you found us here. This a great group of people who will answer ANY questions you have and just be there as people who have walked this path before. Most of all, we like to LAUGH & have FUN!! Feel free to send me a PM with your number if you would like to talk to a live person! ;D
K
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Hi, Melissa -
As Kaybo said, we'll answer ANY question you have - at least I will; my life's an open book ;D
As Kaybo also said, we like our humor. But we are more than willing to be serious when we have to be.
You say your AN is small, but you don't say how small - mind if I ask how small it is?
The vertigo sounds like it's something that's pretty hard to cope with; as Sue mentioned, if you find it gets too debilitating you might want to look into treatment sooner rather than later.
Just my two cents worth,
Jan
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Thanks so much for the warm welcome.
It is 2mm, I will get more information on Monday when I see my ENT. I just got the call today so it's just soaking in...
The vertigo is really bad. I used to only get an episode one time every 3-4 years but in 2008 I had it 3 times lasting around 10 days. Which is what led me to get an MRI done.
~Melissa
42 years old, Mommy to a beautiful 4 year old daughter
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I just got the call today so it's just soaking in...
Wow, you truly are a newbie; I'm glad you found us so soon.
The diagnosis is usually pretty frightening and overwhelming for most of us. It's usually pretty confusing also. I had no idea what an Acoustic Neuroma was until I found out I had one :P
Take the time to let things sink in. There's a list of questions to ask the doctor on the main page of this website that you may find helpful.
The ANA will also send you some informational literature if you request it. It's very informative and written in plain, simple language - not technical medical terms.
Good luck with Monday's appointment; please let us know what your ENT says.
Hang in there,
Jan
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Hi Melissa,
A quick welcome to the forum from me, too. Ask anything you like, no question is too simple or silly for us. Like Jan, I am glad to hear you found the forum so soon.
Steve
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Hello Melissa
Welcome - ask questions - I certainly do! I appreciate all answers I get and have learned so much from these people. Hopefully one day, I too will be a useful provider of info and not just a typer of long posts.
I too am a newbie - 3 weeks in I guess now - with a small AN 5mmx8mm and am a watch and waiter (and a mom of a 4 year old ... and many more, see my siggie!) Luckily, at this point I have no symptoms - even my mild hearing loss (which got me to the ENT) is a bit too mild to even mention (now that the anxiety of the whole scenario has worn off). I am happily (if not still a bit anxious) waiting it out - hopefully for several years. Regardless, I spend time looking for the right solution for me.
Again, welcome.
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Hi - and welcome Mellissa ~
Although an acoustic neuroma diagnois can certainly be intimidating, there is lots of information available on the internet and specifically, as Jan ('leapyrtwins') mentioned, through the ANA.
Unlike Jan, my life isn't an open book - but only because it would put you to sleep. ;) However, my AN experience is open to whatever scrutiny you might wish to impose on it. Seriously, like everyone else who has posted before me, I'm open to questions and we're all eager to help you in whatever way we can.
As you know, an acoustic neuroma is almost always benign and quite treatable, via surgery and/or irradiation. It's the location that make them problematic. Even so, many AN patients come through the experience 'intact' and functioning very well. I'm one of them - and I trust that you will be, too. :)
Jim
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Unlike Jan, my life isn't an open book - but only because it would put you to sleep. ;)
I'm confident my "open book life" would put others to sleep also :D and perhaps at times I'm a little too honest and share a little too much, but like Jim, I'm willing to help in any way I can.
Jan
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Welcome Melissa,
Hope you find lots of help here. Watch and Wait is not easy but knowing you are not alone makes it better. I may not always post but I come in and read and ask questions every once and while and it is so helpful. Our New England group got together this past fall for brunch and it was so validating to talk with others that are dealing with or have dealt with what we all are going though. Good luck with your decisions and research, you have found one of the best places.
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Welcome to our forum, Melissa. So sorry you, too, have an AN.
Your vertigo issues should decrease in intensity as your brain begins to compensate for the damage to your vestibular nerve on your AN side. When my AN symptoms first began, I had vertigo so bad I couldn't even turn or lift my head in bed or drink water without vomiting. I had to hold onto walls while walking for the next two or three weeks. It took me several months to stabilize. Now I just have mild to moderate disequilibrium (it becomes worse when I'm sedentary). You, too, are likely to improve over time. Just know that the severity of your vertigo is likely to be only temporary.
Hang in there. It'll get better in time.
We're glad you found us.
Best wishes,
Tumbleweed
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Hi Melissa,
Welcome and I'm sorry. On the bright side however this has become a much less scary condition and the odds are in your favor that you will be just fine. New surgical techniques, various forms of radiation, etc. My mom lives in Boynton Beach--I'll let you know the next time I plan a visit with her and maybe we can get together. In the interim, hang in there. I have a dear friend who suffers from bouts of vertigo (non-AN related) so I have an idea of how awful it can be. I personally only went through this briefly post-op. And it was pretty horrible. Like Tumbleweed says, it will likely get better.
Best
Marci
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Hi Melissa,
Just wanted to say welcome, I am a newbie also. Sometimes reading on here can scare the heck out of me, but I notice everyone here really cares and are very helpful.
Keep reading and asking questions. I unfortunatley don't have many answers but I can talk and compare symptoms or anything like that.
Hang in there
Dawn
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Hi Melissa
Greeting from Massachusetts, I too am a newbie on the watch and wait, going for my third MRI in Boston in Feb 09. Great forum, research as much as you can.
Best wishes
LisaP ;D