ANA Discussion Forum
General Category => Inquiries => Topic started by: dhsgbb on May 18, 2010, 07:45:31 am
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I am new to this board and was excited to see and read the stories. I'm hoping I can find the same support and guidance that many others have.
I was just diagnosed with AN April 2, 2010. My AN is pretty small, about 6 mm, on the right side. I have mild tinnitis, very good hearing, and little to no other symptoms. I am 37 years and pretty active. I have been going back and forth about which treatment to have. I, of course, like the upfront risks of GK vs surgery much better but the long-term prognosis is unknown with the GK. I would be going to Mayo Clinic and feel very comfortable there--my doctors there, however, did not want to give a strong recommendation either way. I like the idea of surgery (middle fossa approach) in that the tumor is taken out--hopefully--but there are many more risks.
I'm hoping some of you could just provide some thoughts.
thanks
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Welcome dhsgbb,
Since you have just be diagnosed and your AN is still farily small you do have options. AN's generally grow very slowly, when I was diagnosed 2 years ago mine was 5mm. Now it is only 7mm still considered very small. If you watch and wait at least until your next MRI the information gained will give you an idea IF yours is growing and how fast it may be growing. By waiting the six months you will be able to do the research and make the decision that you are most comfortable with. As you already know, there are side effects for each treatment.
Good Luck
TJ
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My tumor was found in Dec 2009, and removed surgically March 2010. I started out waiting. Then I chose surgery. Then I chose radiation. Then I chose surgery again. Does that help you? The point I am making is expect to change your mind about how you will handle this. I read this site every day looking for experiences that others have had. I interviewed three surgeons and one radiologist. How will this work with my job...I am self employed. There were hundreds of questions. It took me two months to finally decide surgery, and who was going to do it. It was the longest two months of my life, but once I decided, the pressure was off. I am very lucky. I am SSD, and my balancing is not like new, but very livable and getting better. This is the total downside to me. The surgery was uncomfortable for a couple of days, but not painful. I have another tumor on the other side, so surgery was the best bet for me. My cochlear nerve was preserved in the event that I have to lose my other ear, and it was because of my second tumor that I chose surgery. Read everything you can get your hands on. Talk to lots of doctors. Talk to people here. Expect to change your mind. Good luck to you and your family.
James
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Dhsgbb ~
Hello and welcome to the ANA Discussion Forums.
I'm dismayed that you've been diagnosed with an acoustic neuroma but pleased that you found this website and decided to post an inquiry.
Just as a previous poster ('TJ') stated, with such a small AN, you have various options, including simply observing ('Watch-and-Wait') via semi-annual MRI scans. Both surgery and irradiation have their respective risks but of course, radiation is non-invasive and recovery is generally easier and faster. The Mayo Clinic has an excellent reputation so you should be in good hands, there.
Frankly, arriving at a treatment decision is arduous and often stressful. No one wants to regret their decision later and of course, every AN patient wants a good outcome for whatever treatment they chose. I suggest you continue your research, perhaps sending for the ANA information - which you can do online. http://www.anausa.org/sc/apps/forms/forms.cgi (http://www.anausa.org/sc/apps/forms/forms.cgi)
We're not doctors and don't know everything but we do care and offer our support to you as you continue on this journey.
Jim
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Welcome to the forum.
This thread might help answer some of your questions and give you a base of knowledge to explore further from:
http://anausa.org/forum/index.php?topic=6670.0
Specifically, see my post part-way down the page.
I hope that helps.
Best wishes,
TW
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Hi and welcome to the forum. I can lend you a quarter, if you need a coin to toss. ::)
Seriously, they are both good choices, so don't feel like you might make a huge mistake. There are good success stories with both kinds of treatment.
Take your time and check it all out. Many of us found that after a while, we kept going back to one of the choices, as much on gut instinct as anything else. When it dawns on you that you won't be happy unless you do that one, your decision finally makes itself.
You will get there.
Steve
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If I were you I wouldn't even think about making a choice until you find out if the thing is even growing. Sometimes these things just stay put and don't need to be treated at all. I met a man at the last symposium who has been W&W for 11 years. Put yourself on Watch and Wait for 6 months. This is just my honest opinion and something I wish I had done.
Capt Deb(http://i235.photobucket.com/albums/ee60/Captdeb_photos/pirate-4.gif)
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Just an opinion from the GK camp. The upfront risks and side effects from GK treatment are pretty much nil. Long term side effects and prognosis are well documented for GK as well as traditional surgery resection. You can get some really good information on GK at the University of Pitt medical Center web site. I would say that GK or CK are the treatment choice of most, for AN's of that size. Some just want it gone though. That is a personal choice you'll have to make.
I went back and forth between surgery and GK and chose GK so I as well as many others here know what your going through. I have no regrets. You have some time. Get all the info you can and good luck. Bryan