ANA Discussion Forum
General Category => AN Issues => Topic started by: beancounter on November 05, 2007, 10:02:38 am
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I had my second MRI to confirm and measure the dang thing. It is 3x2 mm. I am interested in knowing what anyone who is reading this might choose to do, qualified (of course) by my decision being based on whatever my doctor recommends. That is the first step, finding a good doctor when I am in a rural area of Kentucky. Thanks to any and all, God bless each of you.
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It depends on where it is, and how it is affecting you. Mine was pretty darn close to the brain stem so watch and wait was not an option. Who did your confirmation? Perhaps a first step in findiong someone qualified?
What does your insurance recommend? NOT to say to just do as they say, but it is a starting point...
Much Good Luck to you!
Best,
Victoria
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Quoting my MRI report, it is "a nodular enhancing lesion within the intracanalicular portion of the left internal auditory canal consistent with an acoustic neuroma on the 8th cranial nerve". I have zero symptoms unique to "a caustic new aroma"; I initially had an MRI because I had lost my sense of taste and the ENT wanted to rule out brain things. I am trying to keep a cool head but at this moment it is an uphill battle. My plan today is to send a DVD to House Clinic for a phone consult.
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I'm not sure what part of Kentucky you're in, but I live in Nashville, which isn't far from some parts of Kentucky. There are some excellent surgeons at Vanderbilt University Hospital in downtown Nashville, if that happens to be fairly close to you (I didn't do well in Geography in school... so I could be way off!).
Lori
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Wonderful. Keep the plan going!
Is your sense of taste back?
It's so frustrating to be in that waiting limbo. I just had to do it a few weeks ago waiting for my new MRI results and it's just... AUUUUGH!
I don't think it's easy for anyone to understand that has not been there. My husband understands, but he's about it for me.
But Thank God I have him.
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My opinion - and only my opinion - if you're not having major issues, you might want to consider watch and wait. I believe that 3x2 mm is considered small.
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I agree with keapyrtwins, wait and watch.
mema
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Question for Lori67.... does Nashville have anyone (that you may know of) who is an expert in treating AN? I am 90 minutes from there (in Kentucky we don't measure distance in miles, we measure it in travel time lol) Thanks
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Hi beancounter....I am 2 hours from Nashville. I'm in Murray,Ky. That is so true about the measuring in time not actual miles!! I couldn't tell you how many miles it is to Nashville from here. I know they have very good doctors in Nashville for AN's but I go to Arizona because I have family that lives there and it is just a good excuse to visit twice a year. I don't know the doctor's names but I wish you well!
Barbara
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The Otology Group of Vanderbilt is excellent. Dr. Jackson is considered to be one of the best in the field, but he has retired. Dr. David Kaylie and 2 others there whose names escape me at the moment have trained under Dr. Jackson and are very well credentialed and experienced with AN surgeries and treatments. They have a team of neurosurgeons, associate physicians, audiologists, opthamologists - you name it - that work together very well.
I always check out the background and training of my doctors beforehand (I'm a nurse, can't help it), and the resumes ( or Curriculum Vitae for those of you in the medical field) are very impressive. If you go to the Vanderbilt University Hospital website, you can access any of that information. - or their direct website it www.theotologygroup.com. (Betcha couldn't have figured that one out, huh?)
From the person who scheduled my appointment right down to the people who delivered me my meal trays at the hospital, I was extremely happy with the care I recieved. There are some nurses in the ICU at Baptist Hospital (part of Vanderbilt) that have worked with AN patients for 20 years and really know their stuff. I was very nervous before meeting with the surgeons and everything, but I immediately just felt a sort of peace come over me when I met them for the first time. I know it sounds kinda corny, but I really did feel that this was the best place for me to be. I know a lot of other people will tell you the same thing about their surgeons. Sometimes, it just feels right.
Now, just to warn you, Dr. Kaylie has accepted a position at Duke in NC and will be going there in early March of next year. He is working on a study involving the preservation of the facial nerve during AN surgery, which I was happy to be a part of during my surgery. Might as well use me as a guinea pig while I'm asleep, right? I have met the other surgeons in the office and I would honestly say that I would have had the same feeling of "rightness" with them as I did with Dr. Kaylie.
Reading about other people's experiences with the "fun" lingering effects of surgery, I think I am very lucky. While I still have some issues, I am 8 months out and my facial nerve is starting to come back stronger each day. My eye is producing tears, I don't have any pain, minimal balance problems, no ringing in my ears except when I'm really tired. I credit this to being pretty healthy to begin with and to having a talented surgeon. And I might throw in, he actually has a great bedside manner and personality, which is usually hard to come by in a surgeon!
There are quite a few hotels in town that offer medical rates for patients of Vanderbilt and their families. And who knows, you may run into a country star or two (not a country music fan myself, but hey..).
I hope this helps some. If you have any other questions or anything, let me know or send me an e-mail. I'd be glad to help any way I can. I know that in the end, you'll find the right choice for you.
Lori
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Thanks so much. I had no idea Vanderbilt was up on AN stuff, as I haven't seen it mentioned on any of the lists from ANA, etc. That would be infinitely more convenient for me and I will research it further.
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no symptoms? watch and wait would be my suggestion.