ANA Discussion Forum
General Category => Inquiries => Topic started by: Tracy725 on March 27, 2009, 08:47:28 pm
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Hi. This is my first post. I found out this afternoon from the Dr that the MRI says there is an AN about 2cm or so. I've had hearing loss and tinnitus in my left ear for a couple of months now. The Dr put me on steroids and things actually started to get a little better. Then I get the call and wow. I'm a naturally anxious person and this is just killing me. I've been reading all over the internet, which is probably not a good thing, and I'm so totally blown away now and don't know what to do. I'm 48 years old with 3 kids, one graduating High School in a couple of months, and as it happens my wife is away this weekend on a field trip. I feel like there are no good options and that my life as I know it is over. I've been reading a lot of the posts here and the words of encouragement help. Any advice or words of encouragement would really help and a few prayers would sure come in handy too.
Thank You
Tracy
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I feel like there are no good options and that my life as I know it is over.
Well, life as you knew it may be over, but the new life ahead of you is going to turn out to be a good one too. :)
The treatment options may not seem so great, but for most the outcome is good, and life goes on again. In fact for many it becomes richer in various ways. You will be fine.
Welcome to the forum, please feel free to ask any questions and share any concerns. There are many here who have been through it all and will offer information and comfort.
Let the posting begin. :)
Steve
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I was diagnosed about this time last year at 48 with a son about to graduate at the time also...I too was overwhelmed and confused, as are most that come here upon diagnosis.
As Steve indidcated, between everyone here, we've been through just about everything possible related to AN's. So, sorry you've been diagnosed, but so glad you're here and we will help in any way we can. Let us know your questions and you'll get plenty of help, I'm sure.
Take a breath, know that AN's are typically very slow growing, you have options, and you now have tons of new friends to help you along the way!
Cindy
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Hi Tracy,
Just keep reading here - you'll meet a lot of people that have had treatment years ago, some months ago, and like me, weeks ago.
I had hearing loss starting a year ago - my family doc tried a few meds (antibiotics, then allergy meds) then I would let too much time lapse before going back to the doc because I thought the hearing loss and 'stuffiness' in my head would just go away, but it didn't. Summer came and went and I had signed up for a fall marathon. I decided I better make another appt with the doctor and he referred me to an ENT. I didn't want to go before the marathon - I was kind of afraid I might find out something bad even though I felt fine, so I made the appt for 2 days after the marathon.
I guess the ENT broke it to me pretty gently... I went in fully expecting him to say something like 'you have fluid in your ear; we'll do such and such and all will be well.' Instead he said that my hearing loss had been going on too long and I need to get the MRI with contrast. He mentioned that maybe I have some type of benign tumor. Well, that got my attention! We scheduled the MRI.... had to wait for that. Then after the MRI - waiting for the follow up appt. When I went to the ENT for follow up they called me back right away and told me I had an AN and that it was benign and there were several treatment options and 'here's a good neurosurgeon in Baltimore - that's what I'd do if I had this." I came home, got online and started reading too. I found when I read the medical stuff from other sites, the information was over my head plus it scared me a bit more. I found this site and started reading these forum posts and learned so much. Plus I had a million questions, which everyone answered with much patience (and they still do). The personal stories of people have been so helpful.
Many here will say 'welcome, well we wish you didn't have to be here, but we'll support you.' An AN is serious, but it's not the end of the world. There are so many success stories on here - Ernie, Scarlett - their surgeries were very recent (they may both have info under the AN community). There's many others as well. Some have had successful radiation (Steve), others have had successful surgeries, both translab and the retro... (i can't spell it) that Kim and Jan had. Others have had surgery with some complications but are bravely and successfully getting on with everything they need to do and are receiving lots of support here. Others are awaiting their surgeries and started out here like you are - lots of questions and kind of nervous, but now they've made tons of new friends. Anyway, you've been reading these posts and I hope I'm not boring you with info you already know!
Like you, I'm 48, also have 3 kids with one graduating in June (and he's going in the USAF, at which time I'll be on here asking everyone to pray for him and for me because I'll be nervous about THAT!) I had my translab surgery 8 weeks ago. I'm doing pretty well. I'm thankful and I feel life is good. The whole situation has made my husband and I closer. I have a bit of facial paralysis that's most likely temporary and has gotten much better. I was a runner before surgery and I just slowly ran a half marathon last weekend.
Keep us posted on your progress and feel free to ask many questions! You will have many here who will help you and pray for you.
Peace to you,
Keri
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Hi Tracy,
Your life is not over, though it surely is about to change.
My wife was diagnosed 11/12/08, had surgery 9 days ago, and is doing really well. Believe it or not, the AN has brought us closer than ever.
As I've told others, you are among the most compassionate, straight shooting group of people you'll ever meet, we don't know how we would have made it through with out them.
Welcome,
Rich & Scarlett
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Life is different, but a lot more meaningful. Most of us don't take much for granted any more. Every AN takes its own course, and every person has to take ownership of his/her own circumstances. All of us here are happy to encourage and support you as you find your way through this. Let us know what you need.
Priscilla
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Tracy~
I know it seems HORRIBLE right now but it WILL be OK. Take a deep breath and a step back. I am saying a prayer for you right now that you will be able to rest tonight and feel the PEACE and comfort that you will need to help you (& your wife) get thru the next weeks and months ahead of you!! We are here for YOU!!
K
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Tracy,
Let us know more details about what the doctors say, and we'll be here for you through each step.
It is scary, especially the uncertainty of everything. We have the technology to make it better, and you just learn to adapt to any changes.
Hang tough,
maureen
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Tracy, welcome! I was diagnosed with a 2.1 AN on February 11th and will be having translab surgery on Wed, April 1st. It is shocking and has already changed my life, it did the moment it fell off my Dr.'s lips. For me, reading and asking questions helped me to get more comfortable and the people here are so kind and willing to share their stories. Best wishes as you begin your journey.
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Hi Tracy,
Welcome to our group, and we're glad you found us! I can say, without a doubt, that this is the BEST place you can be after being diagnosed with an AN! I scoured the internet, just like you, and this is now the only place I come to (regarding AN's).
My story is much like everyone elses. AN discovered last fall, waited until January before considering options, then finally decided on sugery a month later. My tumor was removed March 5th, and I'm 3+ weeks post-op now.
There isn't much to add to what these wonderful people have already told you. In most cases, the very hardest part of your AN journey (and it is a journey) is before you right now. Acceptance, researching options, becoming comfortable with a great physician (radiation or surgical), then waiting for the day to arrive. THAT'S the hard part.
The day before surgery I had my pre-op stuff going on, which took hours and hours between my physicians tests and the hospitals tests. The day of surgery I got up early, snarled about not being able to have a cup of coffee, got to the hospital by 5:30 AM, and things just flew from there. Next thing I know I'm in post-op recovery!
Just be sure to research, research, research. That's what people told me. I got multiple opinions. I was lucky that I had a highly recommended surgeon right here in my backyard, but I was all ready to travel across the country to do this.
I guess that's about all I have to add, and our thoughts and prayers are with you!
Ernie
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Tracy,
Your life isn't over, there's just a bend in the road. I had my 2.5 CM AN diagnosed 12/16/08, surgery 1/27/09 and back to work 2/27/09. I lost hearing in my AN ear and I am adjusting, but other than that life is pretty much the same. Actually I have other concerns (job issues, ailing mother) that take up more of my attention then my AN issues.
Get as much information as you can, investigate all your treatment options and make a decision. I found that once I made up my mind as to what my treatment course would be and booked it I felt very relieved.
I know it is very overwhelming at first but the more you learn, the more your path through this dilemma will become clear.
Neal
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Hi, Tracy -
it's perfectly normal to be terrified by an AN diagnosis, but as others have said there is life after an AN - and I can tell you from my personal experience it's pretty damn good. Things will work out for you; there are a lot worse things you could have been diagnosed with.
Two of the most important things to do are 1) educate yourself and 2) find a doctor (or doctors) who are experienced in treating ANs.
I'd also like to suggest you contact the ANA and request their information literature; very helpful IMO.
Mind if I ask where you live (what state) ? and what doctor you are seeing? Perhaps others in your area have used the same doctor, or can suggest other doctors in your area that you might want to consult with.
Jan
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I'm 34 and had a 3 year old and a 6 week old when I was diagnosed last fall. I had surgery in november, and with the exception of my facial paralysis, which is improving daily, my life is totally back to normal. I feel good, I can do anything I want to do, and most important of all I can take care of my kids just like I would have been without this mess. It was a rough road for a while, but I am most definitely not only alive, but LIVING. The kiddos are now 4 years old and 7 months...
I freaked out and sold both my barrel horses after my diagnosis because I was afraid that I wouldn't be able to ride after surgery. I wasn't able to ride before surgery because I felt drunk all the time. Guess what, I'm horse shopping already!! :-)
Hang in there.
Vonda
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I'm 34 and had a 3 year old and a 6 week old when I was diagnosed last fall. I had surgery in november, and with the exception of my facial paralysis, which is improving daily, my life is totally back to normal. I feel good, I can do anything I want to do, and most important of all I can take care of my kids just like I would have been without this mess. It was a rough road for a while, but I am most definitely not only alive, but LIVING. The kiddos are now 4 years old and 7 months...
I freaked out and sold both my barrel horses after my diagnosis because I was afraid that I wouldn't be able to ride after surgery. I wasn't able to ride before surgery because I felt drunk all the time. Guess what, I'm horse shopping already!! :-)
Hang in there.
Vonda
Vonda
What an awesome update - congratulations.
Tracy - sorry you are here. While I am a newbie with a teeny little tumor (so W&W for now), I have spent enough time around here to see a lot of positive stories. Even the ones with less than optimal outcomes have many a smile and positive experience to share.
Take your time - absorb the news but this diagnosis, in general, is far from the end of the world
Welcome
Ann
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Hi Tracy,
Your life is not over, not by any means. Maybe a couple of new challenges, but nothing you can't handle. If we can do it, you can do it. I really feel for you and remember being terrified and finding this forum and feeling more terrified but then posting and feeling cyber hugged. You'll be fine.
All best,
Marci
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Welcome, Tracy ~
I can only echo what all the others have stated so well, your life is not 'over' by any means. You'll get through this, just as so many others have. We're here to help in whatever way we possibly can, even if only as a safe place to vent. I was 63 and underwent surgery, then radiation - and did just fine. I suspect you will, too, no matter what course you take to address your AN. Know that the prayers of many will be with you as you travel on this 'journey' and in prayer, we're a powerful force. :) I look forward to seeing your future posts.
Jim
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I found out I had an AN on Feb 13 and since have had surgery and been home from the hospital for 2 weeks. I am doing much better than I expected.I will be 40 in a few weeks. Your life will change but is definitely not over by any means. I have hearing loss in my left ear and have a few more hurdles to get over but I am very determined. I am not sure of the size of my tumor but doc says about the size of a large egg. I'm sure I will know more when I see him on the 7th. Sounds like your kids are around my kids age. Mine are 17 this week and 20. I have an 8 month old grandson which is one of the reasons I am so determined. You will be fine. Family and friends are a must when you get out of the hospital. If you need anything there is a lot of information on this site. I tried to stay away from the internet before my surgery because I too was terrified.
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Hi Tracy,
I have to agree with what everyone before me has said. The AN diagnosis is frightening and confusing. Research your options, ask any questions both here and of your doctors, get as much information as you need to make an informed decision. The decision making process was the hardest part of the AN journey for me. Once I made my decision, everything else seemed a lot easier. Hang in there, you will get through this.
Wendy
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Tracy, it'll get better. I remember also telling my family in the first week or two following my diagnosis that my 'life was over.' What helped me tremendously was doing as much research as possible about my condition and my treatment options. That got me largely past my fear of the unknown. This forum was by far my greatest resource for information and empathy and understanding. We've all been where you are now. We understand. I know it seems like the end of the world to you now, but you will see a brighter day in the near future. I say this not so much because of my own positive experience but because it seems to be the general consensus on this forum. The treatments, although not without risk and (often but not always) side effects, do work 98% of the time.
There will be setbacks, days when you feel low. But trust that every week that passes will bring you closer to being at peace with this and that much closer to choosing and undergoing the treatment that will give you a new lease on life. We are here to help in any way we can.
Best wishes,
Tumbleweed
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I found out I had an AN on Feb 13 and since have had surgery and been home from the hospital for 2 weeks. I am doing much better than I expected.I will be 40 in a few weeks. Your life will change but is definitely not over by any means.
Wecome dmseibert,
I see this is your first post. Best wishes for a speedy recovery.
Hang tough Tracy. As another forumite said, this is a powerful place, draw strength from it!
Rich & Scarlett
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Tracy,
I just had my first MRI done on Wendesday and am waiting for the results. I have 50% hearing loss in my right ear, along with tinnitus. I went into the doc (ENT) and expected him to say I have a clogged eustation tube, fix it and call it a day. Boy was that not what happened, I had two kinds of hearing tests done and he didn't even examine me. He said that I need to have an MRI, I may have an AN. I have been a complete mess since those words came out of his mouth. I know there is something wrong, I can just tell. I will not be surprised tomorrow when the doc calls and says that I came up positive for an AN. I, like you can't even imagine someone opening up my skull and digging in my head. Shaving my head, what if the anestisia dosen't work like that one movie; where the guy is under, but his brain still feels everything. I have never had a major surgery. How am I going to pay my bills while I am down and out? I am 27 and I full time student at the University of Kansas (ROCK CHALK JAYHAWK!!!) and this is just not the time to deal with this. I have not cared to open a text book since all of this came about, don't even want to leave the house. I know that that is not the way to go about this and I need to be stronger, but I just can't find that strength. This forum has really helped me, I see it in a different perspective now. Buit I still don't have the mentality to think about anything else, I have become obsessed with my "possible" AN.
THere is another person on here by the name of Micorsoftfree that is waiiting on her diagnosis MRI. All three of us need to stick together through this.
Stay Strong,
Whitney
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Whitney, We know how scary this all is. Depending on your tumor size and location,you may be able to get thru school before even have to do any kind of treatment. There is also radiation which many do which may be easier to do. One reads what people here have gone thru but what many do not see is how people do well and are just here for a time and off back to the normal life. There can be some adjustments if one has no hearing on one side. There are some other possible issues which are ususally temporary.
I was off 2 months as a nurse. Usually one just feels really tired and not right for maybe 3 weeks or so and then you are able to have just some slower life for more time. We all vary in how it goes and some are back to full speed soon.
One does not have to have your whole head shaved. There is just the small area where the incision is and depending on your hair style it is sometimes covered up with your other hair. Very important issue to us females. Hair grows fast so comes back sooner than you would think.
Talk to us all you need to. One copes better in time. My first surgery was back in 2001 where there was no talk at all that one can be ok and have a normal life again and I was a basket case and sure life was over. Luckily it was not. I wish all who are new possible ANers well and we are here for you. Cheryl R
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Welcome Tracy,
You are not alone. Scary stuff eh? Your life is not over. Knowledge is power.
Have you decided what route you may take. There are so many options and it all can be quite overwhelming. Have you requested the pamplets? The monthly newsletter is also very informative.
Ask lots of questions, there are many knowledgeable people on this site. You will find comfort and support and that is what you need right now.
Michelle :P
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Tracy,
Being terrified when you first get the diagnosis is so normal. As all the wonderful folks on this site have said, you'll be able to get thru this. We are all here to support you. If you haven't requested the booklets provided by the ANA, be sure to do so? The ANA also provides a listing of people with ANs who are willing to talk to others. The Willing-to-talk (WTT) list is something that Phyl has posted information on this site. You can find this posting under the General Category: AN issues
Take care.
Theresa
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Tracy:
Welcome!! I can only echo what has already been said. It's ok to be terrified and I'm glad you found us. Ask all the questions you want and someone will always chime in with an answer. Get all the opinion it takes to help you reach a decision for treatment. Whether you choose to watch and wait, or choose radiation or surgery, it's a tough decision, but we'll be here to help you along on this journey.
Syl
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Well, when I first diagnosed, I was terrified too, but after a few days, I knew that I had to face it and do something about it. Life will continue and should be fine after any treatment option that you select. I'm OK now after the surgery back in Oct 2007 and is living normally with some lifestyle changes, and what happened was the past. I remembered my doctor who diagnosed me told me that, if you have a brain tumor, this is the one you want and he is right.
You'll be OK for sure with whatever option that you choose.
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Tracy, Hi! Hope you are doing ok today.
My sister and i are both here - i first found out about ANs from her last summer, and then 6 months later i get an AN diagnosis, too.
(In fact - see my signature - my sister is WHY i found out about the AN!) I am grateful to her for the knowledge she gave me.
I am also grateful for the doc who ordered the MRI, since to me, 'knowledge is power.' (I stole that quote from anther Forum member!)
And i am grateful for this Forum! We are so lucky to read the experiences of those who have 'gone before us.'
I hope you continue to post on the Forum.
Take care and give us an update when you can.
My thoughts and prayers are with you and your family.
Sincerely,
Sue
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Okay, so I'm in WAY late for this.. But, I'll echo much of what has been said before. Life isn't over, just changed. Welcome to all of the newly diagnosed (or waiting to be diagnosed). This group will be here to support you all the way through and beyond. It's a great place to be..
Regards,
Brian
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I wouldn't worry too much about the late post, Pooter.
We haven't heard from Tracy for a while. Perhaps we did scare him away :'(
I certainly hope not.
Tracy, are you still with us?