ANA Discussion Forum
Archive => Archives => Topic started by: tatianne on July 26, 2006, 07:53:47 am
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Hi all, im so happy to have found this board.
Im 30 years old, recently divorced with three children.
I live in Montreal, Quebec, Canada.
I experienced hearing loss and tinnitus starting about a month ago in my right ear.
I went to a wonderful ENT who sent me for an audiogram which confirmed some hearing loss
in my right ear.
So off for an MRI. I got the results.
It seems that i have a AN measuring 8mm x 3.3mm.....
My doctor says its very small and its not urgent.
He has set me up with a neurosurgeon for next week.
Im so afraid right now.
I hate hospitals, needles and anything else that goes with it.
Im afraid that its cancer even though my doctor told me its not.
Im really confused about the surgery options, or wether to wait or not.
Help !
T :'(
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Hello tatianne,
Sorry to hear that you have been diagnosed with an AN. But welcome to the site. The folks here have all gone through what you're feeling right now. First let me say, try to relax, you're going to be OK. It sounds like your AN is in the small catagory, which means you have all three approaches available to you; surgery, radiation, and watch-and- wait. And since ANs are usually benign and slow growing, there's probably no big rush needed for treatment. Although you may want to consider treatment if you're particular AN is pressing on nerves and causing problems.
Look around at the various posts in this forum. It will give you a lot of information on symptoms that people have experienced pre and post treatment, and more on the various treatment options. Try to remember that many of the people who have been treated successfully, with no after effects, have moved on with their lives and may not be posting here. There is probably a larger percentage of people who post here that have experienced problems after treatment, since they are are still dealing with them. What I'm saying is try not to be alarmed by some of the things you read about here, they aren't neccessarily the norm.
Regards,
Rob
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Bonjour Tatianne!  Accueil ! Comment êtes-vous ?
I understand that this is a very difficult and scary time for you, with this new diagnosis, especially since you are young and have young children.  Know that I am also happy you found us here so you know you are not alone.  My AN was not far off in size (at my initial diagnosis) so I continued to watch and wait, all the while, doing every bit of research I could do.  I learned so much from this site and what to ask my doctors. I truly believe I was as well informed as I could be in chosing my treatment options.... all because of many of the folks here that have shared experiences, outcomes, etc. ÂÂ
We're here for you! Glad to see you here!
Phyllis
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Hello Tatianne,
I have to agree with everything Rob said.  We have all been where you are and it is quite scary.  Mine was also small and my best advice would be to take your time and weigh all you options. ÂÂ
Lorraine
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Three words: Research Radiosurgery Options! They are doing wonders with Gamma Knife and Cyber Knife for these tumors. Especially if you don't like needles and yucky stuff like that. There is a Cyberknife board somewhere--Mark and Phyll know about more it. Keep posting, too, there is a lot of great info shared here!
J'aime votre nom!
A Bientot,
Capitaine Deb 8)
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 :)Dear Tatianne
Take a deep breath and do not panic ! Easier said than done I know but your AN is small and you do have lots of time
to do research about all treatments available to you . Whatever you do do not make a hasty decicion about any treatment
since a surgeon might persuade you to have surgery as the  only option when GK , CK and FSR might also be good options for you . Wait and watch might also be an option . On this site you will find lots of information about all the above but make sure that you only try to access information on AN s about the same size as yours .
I also found out about my AN about the same way as you some tinnitus and loss of hearing which then lead to MRI which
showed AN about 2.2 cm . After the initial shock I spent a lots of time doing reserch on the internet about all the options
for treatment and in the end I knew more about AN s  than my GP . Because the size of my tumour wait and watch was not an option but after referral to a surgeon who was very persuasive trying to paint a unrealisticly rosy picture about
recovery from surgery which had quite the opposite effect on me since I know from these pages and  that recovery from surgery is rarely easy and without complications.  I finally  chose GK which I had 14 months ago here in UK in Sheffield .  The procedure was quick and  easy and just a few days later I was back to normal and apart from some headpain 8 months later
which was treated quickly with some anti inflammatory medication I have felt fine and carried on enjoying life as usual if not more . My last MRI scan showed no further growth and my next MRI will be in December . So far so good .
I wish you luck in your search but remember not to make any decicion in haste and do not get bullied into making any decicion without taking time to think it over . The AN is by nature a very slow growing tumour and extremely unlikely to be cancer . I hope that the neurosurgeon will put your mind at rest on that account and I also hope that he can give you an unbiased opinion about treatment .
Best Regards Katarina
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thanks for your replies, it really means alot right now.
Im trying to be realistic and not over react.
My doctor told me its not an urgent situation, that i could wait years and it still wouldnt be an urgent
situation.
I feel like this is like a big dark black cloud hanging over me and even when i have it treated the cloud will always be there.
You know what i mean ???
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Yes, it is a big black cloud, but don't let it rush you into a treatment you aren't comfortable with. That's why WE'RE here, right guys and girls? The thought of something living in your head that's not supposed to be there is really creepy, it was for me, and I just wanted it gone, now. Don't panic--you have time to make plans and make an informed choice.
Capt Deb 8)
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Hi Tatianne,
I have to agree with everyone that has posted already, take your time and do plenty of research. My tumor was very small and I was on the wait and watch program for 5 years before I did something about it. If you don't like what the doctors have to say, then it's time to look for another doctor. You are putting your life in these doctors hands so you must feel comfortable with them. There are many great doctors out there whether you choose surgery or not. House Ear Clinic in Los Angeles will give you their opinion free of charge if you send them your films. They are more in favor of surgery than GK, CK or other radiation. You will know when you have chosen the right procedure and doctor. You will have peace about your decision when it is right. I wish you the best! Ann
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Tatianne,
Don't worry too much - impossible for you not to be concerned but like the others have said before me, we are here for you. There are a lot of posts on this site but if you need to ask specific questions, just let rip and you wuill get excellent and unbiased comments from a wealth of experience.
AN's are usually (virtually in all cases), benign and very slow growing. My advice to you whilst you pick up the info you need from us and your medico's is to have 6 monthly MRI's to watch the progress of your AN. It may not grow for years to come. Don't do anything unless you have to.
Trying to pick a size that you should consider doing something is around 2cm but again that depends on whether you have any concerning symptoms.
cheers
Laz
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Titanne,
Just like everyone said...take a deep breath! You're AN is small and typically they grow very slow so you have lots of time to decide you're treatment options. Just don't ignore new symptoms! Welcome to our exclusive little group and glad you found us!
Like someone else said those who have had very successful treatments don't post as much if at all. So don't be alarmed by everything you read on this site...
Michelle
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Titanne,
I truly feel you're thoughts, concerns and fear. I was diagnosed on June 22nd with a 2cm AN. I'm sure I have most of the same fears you're experiencing. In my case, I immediately wanted the intruder out of my head and made arrangements with two surgeons at a local hospital in St. Louis, MO. Any type of radiation was not an option for me espeiclally since there may be a day where it would have be to be surgically removed. My thought was, why put off the ineviatable? Fortunately for me, the surgeons are very experienced and after meeting with both, I feel very comfortable with my decision to have Retro surgery on August 24th. Waiting is horrible, but I'll survive. This site is really informative, but it can be scary too. Someone wrote that too many people fail to report sucessful outcomes after surgery and I tend to agree with that theory. I for one, will report how it went as soon as I'm able. I have been privately notified by email from a few very nice people with great stories that have helped me tremendously. I give those people credit who decide to wait and watch, I could never do it, but we're all different. I'm sure you'll come to a decision that your're comfortable with. We're all in the same boat and and I'm learning that boat is a strong one.
Terry
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Tks for all the responses, you have touched my heart with your caring and honesty.
Without you right now i think i would be a basket case !!!
Terry, can you please explain to me the type of surgery your are having or let me knoe of a site in which its explained.
My first instinct is always, I want this thing out and gone.
Tks
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My first instinct is always, I want this thing out and gone.
Tks
That was my first instinct too. It's a foul thought, having that thing in there. But please TAKE YOUR TIME with your treatment decision. You're talking about brain surgery here, and it's rarely a simple case of getting it "out and gone." Learn about your options and consider the benefits and risks of each. Then, if you still want to get it out and gone, you'll know that you made the correct decision. Best of luck!
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  think of it like a wart .. yours is a small one .. if you can stop it from growing .. you can get used to the idea of it being there.. and years from now, you will forget about it ... now if its a big wart .. A golf ball .. its a little more of a problem .. then its gotta go!
remember there are a lot of good stories and outcomes here .. most are good .. a few bad .. I'm kinda in the middle .. I had a 4 cm tumor , which is a large size .. had a mini Stroke while it was removed .. was on a walker for the first 2 weeks (I'm only 41) ..had my wife drive me to work for a few months...
now fast forward one year to today .. working 10 hour days .. fishing when there is time on the weekends... off overseas on vacation in a few weeks .. new car which I'm driving llike crazy ... basicly back to normal .. still have a few facial issuess... but still making progress ! Last year just seems like a bad dream !
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tks jeof, that sounds like a great way of thinking about it.
i am amazed at all the replies and support i have received from this site.
most of all i think its awesome that all of you who have gotten past this are still coming back to provide support
to newbies like me....definitly what i consider to be chosen acts of compassion and kindness.
Much appreciated.
T
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question: sometimes i feel like my good ear has a little ache once in a while, i know my AN is touching my 7th and 8th nerve, do those nerve connect to the other ear or is it seperate nerves over their ??
I think the reason i have the hearing loss, tinnitus and mild head pain/pressure is because of that.
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Hello!
Thought I'd better chime in with my 2 cents worth also.  Yes, please take your time and don't rush into anything. You are so lucky it was found early and that you have options placed before you.  Some of the people on here had no options because their AN was pressing on their brain stem, or was too big for one of the radiation treatments.  Just be open to all the possibilites available to you.  The technologies that are available now are amazing. My doctors actually recommended GammaKnife for me. My AN was at 2 cm, and I just had had my 60th birthday. I'm sure they thought that was the best way to deal with my "problem" and that was fine with me.  I wasn't that keen on having brain surgery anyway! ;D  I sympathize with your fears and apprehensions. Everyone on this forum had that first intial shock when the diagnosis came in and that"Why Me" feeling, the overwhelming frustration of having a chronic problem that, no matter how you choose to fix it, will leave some sort of tell-tale mark on you for the rest of your life. But, time does add some perspective to the situation and after awhile you will come to terms with the "new normal" that is now your life. It will get better. Really. The thing that is gnawing at me, now...3 1/2 months later is the cost!  I have a $2500 deductible on our insurance and it starts over on Sept 1.  So that means the next MRI I have, I'll have to pay a lot of money out.  I hate it that I have something wrong that can only be checked on by an MRI!!  >:( I do now really appreciate the value of blood tests....that would be soooooo much easier... ;)
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tks for your input sue, it has great value to me.
Im sorry to hear of the financial expense you have to deal with, that really sucks....
Im in Canada and fortunatly all of our health coverage is paid for by the government.
It does me long waiting lists and times but I would be in big trouble if I had to pay anything out of my pocket.
I have three children and im divorced,I work a decent job but money is very tight for me under normal circumstances.
Even though this is new for me Im already realizing a lot of things in my life to be thankful for. I have three beautiful compassionate children, wonderful supportive family and friends, a great support group here, great support group from church, my faith in God and thats just to name a few. Things could be much worse couldnt they ???
I have spent so much of my life living in fear, fear of loosing my health, fear of being alone, fear of truely living because i have this crazy idea that if your too happy something bad has got to happen....all that time and energy wasted. No more I tell you, no more wasting time on fear, fear kills love and doesnt allow real life and joy.
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Good for you. You are going to do just fine. Nothing like a major medical problem to shake things up huh?? And to renew yourself, your faith and your spirit. Hang in there, kiddo.
:)Sue
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I was the same way...just get this out of my head....I wish I had known about this site before my surgery and thought more about the "what might happen" after surgery. As everyone has told you weigh your options carefully and ask many questions of the doctors. Then you will know you have made an informed decision and you won't second guess yourself after surgery.
Lorraine
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Tatianne:
Welcome to our group...even though that means, unfortunately, you have been diagnosed with an 'Acoustic Nureoma'.
They can be tough to deal with - or, sometimes not so tough (I say this from experience). You are one of the 'lucky' one's...you caught it early - and it's small. It is quite treatable at this point, likely with non-invasive radiation therapy. Not fun - but at least no cutting of your skull or hospital stay. Watching and Waiting is an option too, and tempting, but while AN tumors are usually slow-growing, they can accelerate their growth, too, on occasion. Your final decision on treatment is ultimately between you and your physician(s) but I would want the tumor outtahere, ASAP. Especially if that can be accomplished without surgery, which is likely possible, in your case. Choose your doctor carefully - and 'get educated' on your options. This site can help...a lot. My neurosurgeon noted that most of his Acoustic Neuroma patients are 'sophisticated and well-informed'. He admired that.
When the terms 'brain' and 'tumor' are part of your diagnosis, you certainly want to learn all you can, especially with the lnternet available to almost everyone, today. This site - and board - are excellent for your continuing 'AN education'. I suggest you use them.
Tatianne, I send you my best wishes for the future - and whatever course you decide to take in addressing your Acoustic Neuroma.
Jim