ANA Discussion Forum
General Category => AN Issues => Topic started by: FLsunshine on September 27, 2010, 10:00:08 am
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Hello all -
I've been in w&w mode since diagnosis of 3mm AN in June 2006. Must admit that in my situation I have been more in the "ignore and denial" mode that w&w. Family wasn't worried about my status (never asks me about the tumor) and so it made it easier for me to just try to forget about the whole thing. I haven't had a new MRI since Jan 2008 -- denial mode kicked in high gear and I actually talked myself into thinking that I had NO tumor... that the doctors were wrong because 1) they didn't seem worried at all and didn't take the time to really talk to me but rather kept saying "see you next time around" (so it felt more like money transaction of more expensive tests and no real medical attention/guidance); and 2) in 2004 my eardrum blew out during a flight (quite painful!) and so in retrospect I concluded that this little tooma thing was just scar tissue from that episode... I mean, really its just 3mm so how can it really be a brain tooma? I know, many of you reading this are saying to yourself "what the heck was she thinking!". But denial was easier than actually taking charge and dealing with this thing in my head. Didn't help that my family wasn't pushing me for info/updates and in fact I think have forgotten themselves that I have an issue since I hide most of my symptoms.
BUT... and here is where the "I'm kicking myself in the ass" new reality comes in... my symptoms have been increasing over the past few months (and yet I conveniently could always come up with excuses as to why... tired, stessed, etc) and then two weeks ago my symptoms became debilitating and very scary. Severe, 4 day headache that I can only describe as the worst one I have ever had in my life, frequent stiff neck (like whiplash) and daily localized headaches behind my ear, constant wonky head (feels like I'm walking in one of those moon walkers at kids' birthday parties), side stepping and nausea, and mixing up words (so much that even my 10 year old is noticing). So now I'm freaking out. At least it got my attention to have a check up. But since I just moved to FL, its been a challenge to find a new Neurologist. Can't get in to an appt until 3 weeks from now -- Oct 18th. So the wait is killing me and I'm pretty much feeling like a deer in headlights not wanting to do anything and scared of every twinge that I feel in my head (thinking that severe headache will come back).
Don't know why I'm writing this post right now except to get this all off my chest. I'm scared, feeling stupid for not having regular MRIs, and just needed to vent.
-- Suzanne, age 44
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Hi, Suzanne - and welcome.
Of course I'm sorry you have to deal with the symptoms of an acoustic neuroma but you'll find this website and these discussion boards are a good place to vent...or seek information, advice and, most of all, unqualified support from folks who have been where you are now and can empathize with your emotions.
I was a denier/procrastinator, too but I finally realized that things were getting worse and, like you, I did something about it. None of it was exactly fun but in the end, it all worked out, as I trust your AN journey will, too.
Jim
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I procrastinated too. I knew there was something wrong, just didn't want to deal with it. I was dealing with a lot of other things I thought were more important. The good news is that these things are normally pretty slow growing. Good news for us procrastinators!! Try not to worry to much before you have your appointment and a new MRI. Like Jim said, things work out.
Julie
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Hi Suzanne!
I have a friend where I just moved from who is the EXACT same way as you...I think she thinks if she doesn't think about it, it will just go away! ::)
Did you mention to the Dr.'s office that you had a diagnosed BRAIN TUMOR & the symptoms seem to be getting a LOT worse...especially the headaches? I have found that any time I even MENTION that the office puts it in overdrive and I amazingly seem to get into a "overbooked" schedule IMMEDIATELY!!
Good luck and if you ever want to talk, just PM me!
K ;D
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Suzanne -
you need to call the doctor's office ASAP and tell them that you need an appointment much sooner than 3 weeks from now.
Perhaps they don't realize that you have an AN and it's been a while since your last MRI. They may just think you are a patient with some symptoms that could be related to just about anything.
Don't take no for an answer - and if that doctor's office can't get you in, call another doctor's office.
Good luck and keep us posted,
Jan
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Jim, Julie, K, and Jan -
Thanks to all of you for your supportive words and response to my post. I'm coming to terms with this whole thing and the guilt is subsiding and I'm turning to action to take ownership of my medical situation. Over 80 people have viewed my post so my hopes are that my brief ranting helped just 1 of them if anyone had been sitting too much on the sidelines like myself.
I look foward to being an active member on this discussion forum and just yesterday sent in my membership fee to support ANA. This truly is a great website, forum, and association for people like us dealing with such an incredibly difficult medical situation.
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Hi Suzanne - once the AN was found, I got right on the ball...but for three and a half years, I completely blew off hearing loss, instability and dizziness and several severe bouts of vertigo, even when one landed me in the emergency room because I could not stop vomiting or get off the floor. I went on my merry way, and pretended like nothing was wrong with me.
So know that you aren't alone. I think it's common for some people to want to minimize health issues and get on with life, just as there are other people who blow every ache and pain way out of proportion and visit their doctors constantly.
I'm glad you've come to this forum to talk. I remember how confused I was when this thing was found. There are so many nice and helpful people here.
Nancy
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. But since I just moved to FL, its been a challenge to find a new Neurologist. Can't get in to an appt until 3 weeks from now -- Oct 18th. So the wait is killing me and I'm pretty much feeling like a deer in headlights not wanting to do anything and scared of every twinge that I feel in my head (thinking that severe headache will come back).
Suzanne,
BIG HUG!
You want to see a neuroTOLogist not a neurologist.
Here is a Florida list for you, from Healthgrades, to get you started
http://www.healthgrades.com/local-doctors-directory/by-specialty/otology-neurotology/florida-fla
Also maybe start a new post under physicians here in the forum along the lines of
"Can anyone in Florida suggest a neurotologist?"
See if you can get a PCP to put you a temporary steriod until you can be seen by a neuroTOLogist... it may reduce the symptoms until you get treatment. (Yes a bandaid solution but it can help your symptoms until treatment time :-\ and you may be less stressed if these are reduced.)
If you show any signs of facial or eye muscle weakness do not fool around and get into see a nueroTOlogost ASAP.
Know that it is totally OK to vent here. Do not beat yourself up over being in the W & W mode... you have enjoyed some time not letting the brain booger dominate your life and maybe now it is time to address the nasty thing.
We are here for you. Ask around and see who else in Florida can help you.
Go to a support group meeting there and start networking with others who can recommend who gave them a good experience in treatment.. and who did not (so you can avoid those ones)
Here are the Florida group leader contacts
http://anausa.org/support_groups_by_state.shtml#florida
Dates for upcoming meetings are here
http://anausa.org/support_groups_by_state.shtml#florida
Hang in there... know that many have treatment and still move on with their lives.
Another HUG
DHM
PS Here is a little video to watch to know what we are all about here at the ANA
http://www.anausa.org/media/anausa_historical_video.wmv
... We are seeing more and more people withOUT facial issues as Ginny (and even myself) experienced ...as the treatment plans have improved so much over the years. You are now addressing your tumor when there have been amazing advancements in technology... even in the last 5 years. Waiting may not have been a bad thing... but now is time to make choices
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Suzanne .....
I did not see this initial post of yours until now. Just want to add my welcome to ANA and this forum of caring, supportive friends. Glad you like us well enough to stick around awhile! :o
DHM has given you some excellent resources and I know you will follow up on them.
I, too, would urge you to be the proverbial "squeaky wheel" and get that MRI moved up (imaging centers have a magical way of finding an earlier appointment time!).
Many thoughts and prayers for peace.
Clarice
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Hi Suzanne! Starting with a 3mm AN which is barely noticeable with hardly any symptoms, watchful waiting would probably be the best course of action. Must monitor these things with your last MRI in Jan. 08 and your new one coming about this month your probably going to get all you need to know on your AN condition. In any case AN`s don`t usually grow that aggressively and even though you have symptoms let your Dr., MRI and good researching be your guide. Whatever the case with today`s technology and acting on what you need to do, you are going to be OK! Best wishes, Mickey
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Suzanne,
Just wanted to welcome you to the forum, and even though you are going to be a new patient I would also push for an earlier appointment. you already know you have an AN so when you call insist on getting in touch with the Dr directly or speak with the advice nurse. Three weeks is way to long to wait.
Keep us posted,
Liz
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Hijack alert *****
Daisy HM,
Thanks for posting the link to the video. It was really well done. Are there any more videos I have missed out on watching?
Anne Marie
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Wow... you guys are great! Lots of good info. So far no luck in getting into a practice sooner. I've called 3 and there is a 4-8 week wait for all even though I've explained in detail what is going on and my diagnosis. Just called Tampa Bay Ear and Balance Center since many threads on this website talk about Dr. Bartels and his team. Wouldn't give me an appt until end of Nov so I left message with their Nursing Supervisor to give me a call so that I can maybe get her attention to move things around. Tampa is 3 hours from me but I'll drive to wherever it takes to get a GOOD doctor to look at my situation and get new MRIs. Its a bit frustrating that when you move you can't get into any of these specialty practices that deal with AN especially when my symptoms are getting so bad that its interfering with work.
Again, many thanks to all.
-- Suzanne
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Hi Suzanne!
If you decide to go with Dr. Bartels and Danner, I would ask them if they could write you a script for an MRI. They prefer MRI's from the University Diagnostic Institute which is on the USF grounds near Tampa. The idea here is that when you do get your appointment made, you will already have a fresh batch of MRI's in hand. Of course, make sure it is with contrast! :).
The onslaught of symptoms may well indicate growth, but not necessarily rapid growth. We've seen some people here with what they call "tiny and mighty" AN's. That said, there's no way to know what's going on until you have a new MRI done.
Dr. Bartels and Danner did my surgery, and I had a wonderful outcome! I have pain from time to time, but a single tylenol will always take it away, so no complaints there.
If you would like more information, feel free to send me a PM!
Ernie
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Hi Suzanne,
Just a late welcome. Sounds like you have had some great advice, and connections. Now if you can just get the system to work- and it will, you will be on your way.
Gotta go with the crazy flow. Nerve wracking for sure.
The guilt thing is completely normal, along with the denial. And don't kick yourself about being "stupid." The doctors were partly at fault there IMO (in my opinion) by not insisting on every 6mos- 1 year MRIs. We trust these medical professionals!
My AN was insidious, because it was so slow growing, had been in there so long, I didn't know it was there, and just kind of forgot about "it."
Anyway, you're back on track. Murphy's Law, huh? You move and then this happens. Those symptoms almost sounded like meningitis-the stiff neck, HA, (other than no fever).
Keep us posted, we care!
Maureen
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Well low and behold... perseverence paid off... believe it or not I'm in Tampa right now. Already had my MRI at UDI and am meeting with Dr. Danner tomorrow for full review of my case including updated hearing tests.
Thanks to Clarice and Jan who pushed me to not take no for an answer and get in with a doc as soon as possible. Once I spoke with their senior Nurse she opened the door right away for me to be seen. Yea!
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Woo Hoo!! ...... or as my kids say, "You go girl!" Glad the wheels are in motion. Let us know what you find out.
Clarice
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That is SUCH GREAT NEWS!!! I'm glad they got you in sooner! Keep us posted!
K ;D
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What a relief for you. Let us know the outcome.
Maureen
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Well low and behold... perseverence paid off... believe it or not I'm in Tampa right now. Already had my MRI at UDI and am meeting with Dr. Danner tomorrow for full review of my case including updated hearing tests.
GREAT NEWS!!
DHM
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That's what I like to hear...you have to be your own advocate sometimes : ) In this case it paid off!
:D
Liz
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Awesome news Suzanne! Keep us posted!
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Thought I'd send an update to close this thread....
Dr. Danner and his staff in Tampa were absolutely wonderful. They scheduled an MRI at UDI on the 6th and the next day coordinated other appts such as hearing and functional tests... all prior to my appt with Dr. Danner. I was so nervous and expecting the worst to see a big fat tumor given all the escalating symptoms I have been experiencing. But LUCKY ME that my AN grew a little over 1mm in two years time. So guess my lil' bugger is a slow growing one. We scoped out a plan for getting my symptoms under control including coordinating my treatment with a local Neurologist near my home in West Palm Beach. Will be seeing Dr. Danner again next month for VNG testing and help with balance and wonky head issues. Overall, a great (no FAB-U-LOUS) outcome to all my freaking out and stressing. Thanks to all of you who read my post and offered guidance and support. You are the best!
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That is GREAT news - so glad that it is all working out & that you have a plan!!
K ;D
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What a relief! I'm wondering if 1 mm of grown can actually make all those symptoms?
Either way, so glad you are getting some help with your issues.
Celebrate!
Maureen