ANA Discussion Forum
General Category => AN Issues => Topic started by: BonnieB on August 28, 2009, 04:22:33 pm
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I have no hearing in my left ear at all. I am waiting for the specialist to call me. I woke up with no hearing on 8/8, my Ent thought it was from a virus. Just got my MRI back and the growth is 1 inch. I live in Dallas Tx area. I am refered to Dr. Roland at UT southwest. Does any one know who else I should check with? Has anyone lost thier hearing and had it restored?
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Hi Bonnie and Welcome to the forum.
I didnt lose my hearing all at once but it I had gradual loss with total loss due to surgery. This place is a wealth of information or just ask....An AN journey and recovery varie from person to person.
JO
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Hi Bonnie~
I am from Texas too, but way at the top. I am really not familiar with Dr.'s there (but I could find out if no one has personal suggestions - my brother is friends with an ENT in South Lake/Ft. Worth - I talked to him last summer at a baseball game). I know that when you first get this diagnosis, it is hard to take it all in, but take a deep breath & know that it is all going to be OK. I had my surgery 13 years ago at 25 - I went on to have 3 girlies and a GREAT life! Check out my blog if you want (click the world icon on the left). I would LOVE to chat with you on the phone if you would like to talk to someone. Just PM (comment bubble icon) your number and I will give you a call.
K ;D
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Hi Bonnie,
I'm a newbie from the Dallas area, too, and had my first appointment just this morning with one of the other docs at UTSW! Was supposed to see both Dr. Mickey and Dr. Kutz, but Mickey cancelled, so only met with Dr Kutz.
Please keep us posted on how it goes with Dr. Roland. Part of the office experience there was just a train wreck, but Dr. Kutz himself was great. Even my husband (who usually loathes doctors of all sorts) liked him, which is nothing short of amazing.
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Welcome to you, June-less...I LOVE your screen name as I am CERTAINLY no Cleaver!! All the stuff I said to Bonnie go for you too...I am just too lazy to write it again! ;D
K ;D
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Welcome to you, June-less...I LOVE your screen name as I am CERTAINLY no Cleaver!! All the stuff I said to Bonnie go for you too...I am just too lazy to write it again! ;D
K ;D
I'm with you on the laziness...hence no new subject yet from this noob. Much easier to lurk and reply to others! I'll try to post my own dx story soon, so as not to hijack someone else's.
Thanks for the welcome!
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Hi Bonnie and welcome to the forum ;D
I had diminished hearing prior to my AN surgery, but the surgery left me SSD (single-sided deaf). I had a BAHA implant and that is how I have "normal" hearing once again.
Generally, when one loses hearing due to an AN it doesn't return.
Hi, June-less and welcome to you too ;D
Like Kaybo - one of my sisters ;) - I'm no Cleaver either. But that's another story - I'd better get back on topic before Phyl comes along with her bullwhip :D
Jan
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Welcome to both of the newbies! I am in TX also, but in the Houston area. You will find lots of support, advice,and comfort here. They held my hand through all my trials and tribulations, so don't be afraid to ask anything!
Priscilla
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Hi Bonnie and welcome!
Sorry you had to join this 'crazy' AN club ::), but know that you are not alone.
I am from Virginia, so i cannot answer about the docs in your area. Just take it one day at a time and do your research.
The folks here are FANTASTIC, so keep reading and asking questions.
Hi Imnocleaver! I love your screen name, too!
Take care and keep posting!
Thoughts and prayers,
Sue
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Hello Bonnie and welcome.
Did your ENT give you a steroid prescription? If taken right away steroids can help reverse sudden hearing loss if it is due to tumor related edema. I had sudden hearing loss twice, and both times it came back with a course of steroids.
Your AN is still small, and you have plenty of time to do your research.Make sure you get informed as much as possible before you make any treatment decisions.
Best wishes,
Marianna
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I live in Grapevine and had my surgery at UT Southwestern with Dr Isaacson and Dr Madden in the Aston building beside the Zale Lipshy hospital. I lost my hearing over the period of a year; my AN was 1.3cm but had choked off the hearing and balance nerve during that year to where there was nothing left to save. They tried steroids first, which I guess is the usual route; finally got my MRI with contrast and there it was, glowing plain as day. I was in surgery within a month because of the affect it was having on my balance; barely able to drive and work. Since there was no useable hearing left, I chose translab, so they could get their best access to the tumor and reduce the facial paralysis risks. UT Southwestern is a great place; I was very impressed with everyone I dealt with.
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Bonnie ~
I'm sorry to learn of your AN diagnosis but glad you've found the ANA website and decided to venture an introductory post on the forum. I'm not a doctor and can't credibly answer your question on the chances of regaining your hearing in the AN-affected ear - but it may not return. This is an unfortunate aspect of an acoustic neuroma. Many AN patients lose their hearing gradually, almost imperceptibly, as I did, while others lose it 'overnight' as the tumor grows, slowly but surely compromising the hearing nerve. Some lose only a little hearing ability and a few, none at all. It's quite random. I hope your hearing can be restored, and please consider these forums and the folks who voluntary give their time and opinions as a resource. We're here to help as much as we can. Just ask. :)
Jim
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Hi!
I lost my hearing suddenly as well, about halfway through my second pregnancy. I was diagnosed when my sons were 3 years and 4 months. I had surgery when they were 4 and 1. I can't speak to the doctors in TX, but I can speak to managing the AN and treatment while parenting young children (I now have 3 kids - 7, 4, and 5 months). My AN was about the same size as yours.
Unfortunately, in my experience there's little chance of restoring hearing once it's gone. There's better chance of keeping what's left, but I hope you can be the exception! After my surgery, I am 100% deaf on the AN side (a known side effect of the surgery) but find that it barely affects my day-to-day life.
Good luck!
Katie
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Hi Bonnie,
Welcome to the forum. This can be a very overwhelming time but it does get better and everyone on the forum is a great help for advice and support. You have time to come to terms with the diagnosis and to understand your options for treatment.
Vivian
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Welcome Bonnie and imnocleaver! I am just over 3 months post op and I am back to doing everything! I had 95% of my hearing pre op, but chose to have translab which removed the hearing nerve - hence lost all hearing on the AN side. I am 39 with an 8 and 10 year old. At first, I was most scared of what they would experience, but quickly learned they are strong and only know what you share and show them.
Hang in there and ask questions! That's what we are here for ;) Alicia
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Welcome Bonnie and imnocleaver!
Great support here. I see you have already found some fellow texans and many moms with AN's.
The forum can get a bit overwhelming if you read too many posts that don't pertain to what you are going through. (Ignore the worst case scenario stories-they are few and far between). :o-(mine kinda included)
So take forum breaks- this tumor is small growing, benign, and is treatable. Docs are always optimistic :)
Looking forward to assisting both of you through this :) :) :)
Maureen
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Hi Bonnie, I am also new to the forum. I live in Texarkana, Texas and I am using Doctor Mickey and Doctor Roland at UTSW. My first inkling that anything was wrong was August 2006. I had gamma knife May 2007. Hoped that would take care of problem but am starting to have issues. I go back for an MRI, visit Doctor Roland & Mickey on September 9. I love Doctor Mickey. Will probably have translab done soon. Will know more after seeing doctors. I have been very satisfied with the doctors and staff at UTSW.
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Bonnie,
I lost my hearing over night in my left ear, it was fine when I went to bed the night before. After two weeks of being on Prednisone my hearing never returned, but as MK said it worked for her, just didn't work for me. As far as Dallas, TX is concerned, the only thing I know about that is that the Cowboys are probably going to stink again this year........sorry, couldn't help myself, just trying to lighten the moment.
Seriously, you are among friends here........read as much on here as you can, but please keep in mind that there are so many good outcomes that you never hear about.
John
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Hi Bonnie & welcome
I don't spend as much time here as I use to when I was first diagnosed. The board is tremendously helpful, knowledgeable and wise. I was a bit overwhelmed at first, but with the influx of info, I also learned a lot, and made a decision based on all the input and have found great peace in this benign thingy.
I too am a mom of three boys (5,3,2) as well as my girl (7) - I am a bit longer toothed than you, still 37 years old for a few more months.
Out of curiosity, is the tumor 1 inch or 1 cm - most tumors are measured in cm (or in my case mm). I am Canadian so metric is pretty close to home but no so familiar in the US. [1 inch = 2.2 cm]
Good luck with your research - the right option for you will become apparent.
I am watch n'wait as the tumor is so small, and I am asymptomatic save hearing loss (mild) and tinnitus. I am confident, possibly over confident, I will stay watch n'wait for several more years but I am very lucky the tumor is so small.
Ann
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I have no hearing in my left ear at all. I am waiting for the specialist to call me. I woke up with no hearing on 8/8, my Ent thought it was from a virus. Just got my MRI back and the growth is 1 inch. I live in Dallas Tx area. I am refered to Dr. Roland at UT southwest. Does any one know who else I should check with? Has anyone lost thier hearing and had it restored?
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Docs are always optimistic :)
If they are, not all of them come across this way. My neurotologist scared the sh*t out of me when he told me all the things that could happen to me if I chose surgery - even possible side-effects with a very minute possibility. He's a huge believer in honesty and full disclosure - which I learned to appreciate as time went on.
Jan
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Bonnie,
Mom of 2 here (kids:one almost 11 and other 15)... age 46 chiming in...
I know this is totally overwhelming... :o :-\ ....but as an experienced mom and AN tumor survivor know that I am sincere when I tell you that,
"You and your family is going to get through this!"
Know that this ANA family, IE the ANA discussion forum here, is super... and they are to be credited with getting me through this... as a mom etc.
I have sent you a personal message. Please check your inbox.
Cyber HUGS
DHM :)
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Hi Bonnie, just want to say "welcome", you've found a place of great support. I am 39 (hanging on for a few more weeks) and have four little ones, 1.5, 4, 6, and 6. I had an AN about your size, mine was 2.1 cm, a little smaller than an inch. I sailed through my recovery and was back to full time mom on my own after a couple of weeks. Ask lots of questions! You can read my blog, just click the little world icon under my name on the left. Best wishes with your AN journey.