ANA Discussion Forum
AN Community => AN Community => Topic started by: anissa on March 01, 2009, 04:18:11 pm
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Hello, am I glad to have found you all! I hope this is the right forum for this note, if not please feel free to move it.
My name is Anissa, I'm 39 and live in Idaho. I'm married with 4 kiddos (ages 5, 5, 3, and 1). I was diagnosed with an AN 2.1cm about 3 weeks ago. Last Thursday I had a consultation with my neurotologist, Dr. Clough Shelton from the University of Utah. Surgery is forthcoming but I don't have a date yet.
Just wanted to introduce myself and say that I'm looking forward to getting to know all you fine folks. I have so many questions but I'm going to spend some time reading here before I start asking.
So..."Hi!"
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Anissa~
So glad to see you here!! Welcome! Feel free to ask anything - we are a VERY open group & just want to help others. I know that this is a group that you don't want to be a part of but you won't find a better group of people!! Did you get my e-mail? If not, I can PM my info to you here!!
K
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And Hi back, Anissa!
Welcome! We're ready for your questions! Fire away!! ;D
Lori
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Hi there Anissa: What a thoughtful introduction ! Like K said, we're all here to help. Sounds like you're taking the right steps with your neurologist, & finding the treatment that's right for you. Since you have a 2.1cm AN, seems like the decision is between surgery or radiation.
We're all here to help.
Always good thoughts, Nancy
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Greetings and best of luck to you. I had a 2.4cm AN removed on 1/27/09 and had a pretty smooth recovery so far, except for the deafness of my left ear. I recommend you get as much info and ask your doctors as many questions as you can. You will get some great information here on this forum and the folks here are great for support as well. Pleas keep us all posted.
Cheers
Neal
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Hi and welcome,
I hope you find what you're looking for here--I know I did. Ask anything, we'll all chime in.
Be well,
Marci
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Hi Annisa, let me throw out my welcome along with the others. You've got a great group of people on this forum willing to share their many different experiences....so don't be afraid to ask any questions.
Patrick
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Anissa:
Welcome!! Can you share with us how your AN was discovered? Was it by accident or did you have symptoms, such as hearing loss, dizziness, facial weakness that made you go to the Dr?
Syl
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Hi Anissa,
I took a look at your website blog, using that little world icon under your name (hint hint).
I of course had to look at your MRI pic as well. FYI, 2.1 cm is a little less than an inch (1 inch = 2.5 cm). I think that is a little smaller than a ping pong ball, but bigger than a malt ball. And the MRI pics are from below your head looking up, not from on top, and from the front, not the back, which is why your right side is on the left side of the picture (just like in regular pictures when you think about it).
I have to say, you seem to be right on top of the whole business, considering you were diagnosed less than a month ago. Welcome to the forum!
Steve
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Look at you go, Steve - I got it & clicked onthe world!!
K ;)
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Welcome Anissa
I am a somewhat older newbie (diagnosed way way way back in Dec '08) and also a mom of four little ones. (I willl assume your older pair are twins, but not necessarily - have met otherwise). I don't have twins - but somehow ended up with four regardless - 6, 5, 3 and 1. I also have a AN - but a teeny weeny one, and so get to do nothing but fret way way too much.
Ask questions - someone will have a perspective/advice. I find the world of AN treatments conflicting - you may be somewhat 'lucky' (really don't mean it that way) as you might be borderline grew yourself out of radiation. (but the tumor can be larger for radiation too - but again, that is way beyond my ability to comment ... start asking questions, others do have much more insight to me).
Good luck, welcome to the gang, deep breathe!
Ann
PS - Steve you are good - I just added my blog, and had NEVER noticed the little 'world' on the right side!
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Ok, Steve, thank you so much! I really needed the size of an object, something I can hold in my hand to help me visualize how big it is. That helps! And the MRI pictures, that is weird how that works but it makes sense now. I had to go back and look at my MRI to figure it out. That technology really is amazing. I am an Internet/research junkie, you know, knowledge is power and all that.
I started pursuing answers after 2 months of trouble hearing and a feeling of being off balance. Tinnitus started between the 3rd and 4th months. I don't have any facial paralysis at this point but my hearing and more so word discernment decrease with every hearing test. I am starting to feel anxious and really want to get this overwith ASAP. Every ache and pain has me wondering if the tumor is going to kill me, but then I do tend to overthink things sometimes.
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Hi, Anissa ;D
Love your blog - thanks to Steve for the clicking on the world hint - as otherwise I would have had no clue :D
I just want to clarify two things:
1) an acoustic neuroma of 2.1 cm is generally not classified as "large" - it's more like medium and 2) there is something you can do for SSD (single-sided deafness).
Since you are a self-confessed internet junkie, I won't give you the specifics, but search on BAHA. I have one - as do several others on the forum - and they are amazing. You should also search on TransEar - another option for SSD.
Jan
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About the AN size, I know! That's what I thought. I classified it as a med but my Dr. classified it as a large because it was pressing on my brain. Does that matter? I was not expecting him to say that.
And, I wrote that note after my Dr. appointment last Thursday and didn't find this forum until today so I didn't know about the BAHA until a few hours ago. I was just telling my husband about it and we're both relieved that there is an option if the SSD is too annoying. I am going to search for both the BAHA and the TransEar, thank you!
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Welcome! I am new too, but not to AN. Would love to give my 2 cents worth whenever I can.
Maureen
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About the AN size, I know! That's what I thought. I classified it as a med but my Dr. classified it as a large because it was pressing on my brain. Does that matter? I was not expecting him to say that.
Location isn't normally a factor in saying medium or large, but it is a factor in saying radiation candidate or not. Medium but pressing on the brain stem would tend to mean radiation was less favorable, which I think is your situation. He may also mean that it should be treated sooner rather than later, for the same reason.
By the way, I think BAHA's are cool, and better than a regular old hearing aid like I have. You get to have a titanium post in your head, and a high tech device that you can snap on and off whenever you want. 8)
Steve
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I would believe the medium size pressing on the brain stem (in all of my 3 weeks of wisdom, ha ha).
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Anissa,
Don't doubt yourself - it's amazing what kind of knowledge you can pile up in just 3 weeks when it's your brain involved! :D
BAHA is definitely a great option (and very cool, as well), but if you decide it's not for you, you can always be a BAHA-WANNABE like Steve! ;)
Lori
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Anissa,
Welcome to the forum! I see the welcome wagon has already been here, so I'm chiming in a bit late.. Like you, mine was pressing against the brainstem so surgery was most likely and sooner rather than later. I was more into the "large" category than you, but we're very similar in other respects. If it helps at all, my surgery was in May 2008. In many respects, I've returned to an active lifestyle (and 2 young children to boot!). If interested, I've posted my story (link below in my signature) to show people from diagnosis, surgery and beyond..
Welcome aboard!
Regards,
Brian
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Hi Anissa,
So glad you found our little hide-out. This is a great place to come for support, information, and maybe a few laughs along the way. You might even forge some new life-long friendships.
Your blog is great as I visited it too. You did a great job and you seem to be handling all of this new information quite well. Good for you! I do wish you well, and I hope your eventual treatment and recovery go smoothly.
Welcome to our world. Sorry you found yourself having to find an AN support group, but so happy you found us.
Take care,
Sue in Vancouver, WA USA
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Hello and welcome, Anissa ~
I'm coming in late on the welcoming committee receiving line so I'll just say Hi! for now. I'll be looking forward to your future posts, in the hope I may be able to offer you a bit more. :)
Jim
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Oh and by the way, Anissa, please read this article about how the balance system works. It is highly informative and helps to explain a lot of what is going on that you might not even be aware of yet.
http://www.hearinglosshelp.com/articles/balancesystem.htm
Sue in Vancouver USA
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HI Anissa,
I'm an oldie here and don't log on much anymore, but Andrea in SLC just let me know about you. I had Dr Shelton in 2004 middle fossa at the U of U hospital. MacDonald was my neuro surgeon along with Shelton. If you want to chat email me @ xxxxxxxxxxx
patti
Message from Joef: Sorry, I removed the email address. Please use PM to "Patti UT"
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Patty YOOTEE! Geesh, woman... how many times we tell ya no personal emails in posts... geesh.. and btw, stop sending the Splenda (snow), will ya? :) Good to see you posting! xoxoxo
Hi Anissa,
Just a hearty welcome to you! Much support already coming your way and not much for me to add to it... but, just a welcome to you. I try to keep up with everyone here (not easy, trust me...) but hoping you are finding answers and support you need here.
Again, welcome.
Phyl
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Thank you all for a warm welcome, as you can tell I'm making myself at home here. ;D Patti, I sent you a PM.
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Patty YOOTEE! Geesh, woman... how many times we tell ya no personal emails in posts... geesh.. and btw, stop sending the Splenda (snow), will ya? :) Good to see you posting! xoxoxo
OOPS! FORGOT, been too long since I was a regular on here ya know..... Sorry 'bout the splenda Phyl, actually, it's not coming from us, we have had a fairly mild winter, (even htough were getting some splenda right now) I know you guys got slammed this year.
I'll be in touch Anissa.... got your PM. send me your personal email, I'm looking up some hotels for you. maybe my hubby can get a corp rate somewhere for you..
Patti Ut aka yootee
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Welcome ... not a place you would want to be unless like us you need to be here...glad you
found this place ... it keeps me sane at times ... not off roofs but sane :D
wahhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhh
I don't wannabe a BAHA wannabe ...I want one now (she says while stomping foot)