ANA Discussion Forum
General Category => Inquiries => Topic started by: simo on November 20, 2008, 10:17:08 am
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2 weeks ago ,on 11/07/08 I was diagnosed with AN 17mmx17mm , my doctor send me to Dr wanamaker at syracuse for my first visit . can any body tel me
something about my situation . cause Im really worried . thank you
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Simo,
I was just diagnosed one month ago, with a 1.7x1.0 cm AN, so I'm a newbie, too. I would start by reading the first page of the ANA website for information. Also www.anworld.com also has a lot of info.
The options are watch and wait, radiation and surgery. You need to start researching this website and just begin reading all you can. Your options will depend on several things that your doctor will be able to discuss with you. Is it touching your brainstem, etc. things like that.
It is very disturbing news, but I've spent hours researching, and you probably will, too. There is much support on this board, so ask away!
Tisha
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I would like to encourage you to join the ANA and have a look over all the great information they send to you. You will find information on vestibular schwannomas, information on treatments (micro surgery, radiation or wait and watch) giving an explanation on why some choose one over the other, also you will be given information on doctors qualified to treat these rare tumors (very important here) along with a list of members you can talk to on the phone.
Sorry you have to join us and you are at the beginning stages of gathering information on what to do next. I for one would not make a decision on how to treat before I read over the packet from the ANA and had two or more consulations with surgeons and doctors that use radiation treatment. You need a well rounded explanation of what you have and how to treat.
Where are you located? Welcome to the "club" and I'm sure the rest of the "gang" will be around shortly.
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Simo,
Welcome! It's scary being told you have a brain tumor, but remember ANs are benign (not cancer). It'll be ok. With a tumor of your size (medium), you have the three options of surgery, radiation, or watch and wait, as Tisha mentioned. These tumors are generally slow-growing, allowing you time to research, get 2nd, 3rd, 4th... opinions. With all treatment options, there are risks, such as hearing loss and facial nerve damage, which are often the primary concern to the patient.
I take it you haven't seen Dr. Wanamaker yet, and that is why you are terrified.
You will find this discussion forum full of great information and people. So hang around a bit and you will see that it'll be ok.
What were the symptoms that made you go to the Dr?
Syl
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Simo:
Hi - and welcome to the website and the forum. As we always state, we're sorry to learn of another person with an acoustic neuroma but pleased that you found your way here because this site/forums are a great resource for the newly-diagnosed AN patient. Its good that you're seeking information about your diagnosis but in reality, your visit with the doctor will explain a lot of things. Don't be passive during your consultation. Ask questions. I suggest you write down your questions and take someone with you to write down the answers as we often forget details when confronted with a complex medical situation like this. You'll probably be offered the choice of 'watch-and-wait', radiation or surgery. Your decision on treatment will have to take into consideration not only the size but the exact location of the AN as well as whatever symptoms you may be experiencing and how much they affect your quality of life. You may choose to simply 'observe' the tumor ('watch-and-wait') via semi-annual MRI scans to see if it is growing or dormant. Your consultation with Dr. Wanamaker should clear up a lot of your ambiguity and of course, although we're not physicians and cannot offer credible medical advice, the many folks that post on these pages have a lot of real-life experience with acoustic neuromas and are ready and eager to offer whatever information and support we can. That includes me. :)
Jim
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Hi Simo,
I wanted to welcome you to this forum and see the welcome wagon is out in full force as usual. I don't really have much to add except to say that although the AN diagnosis is very frightening initially, as you gather information it will be easier to handle. I think you will find this forum a wonderful source of information, support and empathy. Everyone's AN journey and is a least a little different but the emotions this experience evokes are pretty much universal We will be here to support you in whatever ways we can. Feel free to ask questions, vent and join in the hilarity when you want to.
Best wishes,
Wendy
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I want to thank everyone who wrote to me . and for more more infomation about my case . I am 41 , live in ithaca NY , my only symptome is ringing on my right ear.
My apointment with DR wanamaker will be on Dec 3th and I will let you know guys . Have a happy thanksgiving
simo
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Simo, Good luck with your doctor's appointment on Dec. 3rd. Just take everything one day at a time - and when it is too much, don't forget to take a break. Sometimes, it is a lot of information to absorb all at once. I am fortunate (or unfortunate, depending on how you look at it) that my sister leads the way for me in the AN journey... She was diagnosed 6 months ago, and me in Sept. 2008. Weird, huh?
Anyway - i am so grateful for my sister, and for all of the wonderful people here on this forum. Even though each person here has his/her own unique story, i have learned a lot of information here, and often do additional research/reading after seeing the resource on this forum.
I agree with Jim Scott and others that it can be really good to have someone go to the appointments with you, and help you record any information you may receive/learn. I found this list of questions from Kate B. on this forum, and plan to use it in January 09 when i visit my first surgeon and radiologists: http://anausa.org/forum/index.php?topic=53.0 [Believe it or not, i read my MRI report before the doctor ever called me - he's in another town. He confirmed the information 'over the phone' and i told him i would do nothing for 6 months - so watch and wait. I will have a follow up visit with him in April 09, 2nd MRI and hearing test.]
What i really like about this site is the search features - i am still learning them, but it has been very helpful searching specific questions/items.
I do NOT like this merry-go-round some days - but have become more calm with more information.
Take care and let us know how you are doing.
Sue
From Virginia
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Simo - Sue is right, information is power. The thing to remember is that it's treatable. I was diagnosed last July after onset of some quite dramatic symptoms including total hearing loss on the affected side. Thank God steroids have done their job and my hearing is now useable. Everyone's journey here is unique and it takes time to work through it. I don't post often, but keep watch here frequently. I ended up undergoing GK rather quickly after my diagnosis, which I now believe was the thing to do, despite some minor setbacks along the way.... altho Drs. presented the option of microsurgery also, telling me that whichever I picked, to not wait long. I have gone through some stages including anger and depression - and am now at a good place and doing well. I know I was asking lots of pesky questions at first and you shouldn't be afraid to do that. People are kind and patient here and there's lots of caring too. I spent Thanksgiving in thanks for doing well, as corny as it sounds. My family has lots of bad neurological medical history, and I see my AN as a minor nuisance compared to other things. Take care and let us know how things are going. I'll remember you in my prayers. ~~Joey
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Simo -
like Arushi suggested, you should contact the ANA and get their informational brochures. They are a great resource and they are written in layman's terms - not medical speak.
There are some excellent doctors in your area - Drs. Roland & Golfinos in NYC come to mind - so do your research and get multiple consultations.
Good luck,
Jan
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Simo,
I was just diagnosed one month ago, with a 1.7x1.0 cm AN, so I'm a newbie, too. I would start by reading the first page of the ANA website for information. Also www.anworld.com also has a lot of info.
The options are watch and wait, radiation and surgery. You need to start researching this website and just begin reading all you can. Your options will depend on several things that your doctor will be able to discuss with you. Is it touching your brainstem, etc. things like that.
It is very disturbing news, but I've spent hours researching, and you probably will, too. There is much support on this board, so ask away!
Tisha
Thank You for the link to this web page.It was very informative.