ANA Discussion Forum
General Category => AN Issues => Topic started by: andrea in slc on September 22, 2008, 09:19:01 am
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Hi everyone! Holy cow, can I already say thank you so much for all the info on this site? I have learned a TON already, it helps with the freaked out feeling!
I'm a 41-year-old from Utah who started getting vertigo in February of 2007 (yeah, happy 40th birthday to me). Finally went to an ENT in late March, gave me the usual steroids and antivirals. I also had an MRI with/without contrast, radiologist said nothing was there. I developed what I thought was Bell's Palsy in early April, and was diagnosed with Ramsay-Hunt Syndrome, which is caused by the chickenpox virus (think shingles, but it attacks 7th and 8th cranial nerves). The Bell's calmed down, I went for vestibular and balance therapy, helped somewhat, and for a time all was peachy. Last fall the dizziness/vertigo flared up again; this time steroids and antivirals didn't help, neither did the balance therapy. Since October of last year, it's been a rollercoaster ride to find out what the heck is going on.
Thankfully, my ENT listened to his gut,which told him to start testing all over again because something wasn't quite right. He called me last Wednesday, 2 hours after my MRI, to tell me I have an AN. Apparently, the %$&&*&* radiologist from 18 months ago read the MRI wrong, and somehow missed a 2.2 cm AN. He had the radiologist from this MRI check the previous one, and yep, there it is, in all its AN glory. Can I just say how angry I am and how much I want to hunt down and slap the crap out of the first radiologist? Oops, sorry, let me go get chocolate to calm down. ;)
Anyway, now that I know what it is, there is a sense of relief from the uncertainty. Of course, now there is the nervous/scared/freaked out feeling of "oh yes, I will be having brain surgery." Thanks to this wonderful site and the info from all of you, I'm a little more calm!
I have my first appt with a neurotologist on October 1, and we'll see where we go from there. I know this thing is supposed to be rare, but in a weird cooincidence, my sister-in-law's father has one too, and he's having his removed on November 8th. We thought it was pretty strange!
Off to read more info and become more informed. Another strange thing, I'm a medical transcriptionist, and I transcribe for both an ENT and a radiation oncologist. I'm keeping my ears open (at least the one that still works) for different treatment options. ;D
Andrea
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Hi Andrea and Welcome to our little elite club. Ask any questions you wish as no questions are dumb. We are all here for support and to give support if we can.
JO
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Wow! That`s one heck of a story. Well anyhow now you have what the problem is. This is a great site for finding out alot of info with alot of real nice people with similararities. Good luck going fowards, prayers are with you!. mickey
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Hi Andrea-
And welcome to our happy little group. I was appalled to read about your radiology report - good grief! Well, a least you have a firm diagnosis now and can start the process of trying to decide what course of action to take. You may want to get an extra set of your film (on CD) and send it to House Ear Clinic in LA - they will do a free phone consult with you. That was my first (of three) consults, and I was very glad I contacted them - even though I ended up having surgery closer to home in NY. Please ask as many questions as you'd like - we aren't doctors, but we've all been down this road so we can certainly provide lots of moral support. Meanwhile, I like your idea of chocolate and think I'll go find some myself!
Debbi
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Hi Andrea
Welcome to the Forum. You found a good place to be. I do share your anger and frustration over your mis-diagnosis. How does one go about missing a 2.2 CM tumor? There is a wealth of information and advice here. Please do ask away. As I have always found, what may seem to be a silly question will always get an intelligent answer around here. And guessing from your name (SLC) you've from Salt Lake City. Beautiful place.
Best wishes
David
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hey andrea,
i actually had symptoms as long as 8 years ago and was tested for absolutely everything....except mri. my doctor looked me in the eye and said "if it would make you feel better i'll give you an mri, but i promise you don't have a brain tumor." so yeah...i know about that wanting to punch someone in the face feeling!!! needless to say i no longer see that doctor.
i just got my surgery date of nov 17 and after all the years of pain and searching for answers i can't tell you how excited and relieved i am! we actually went out and drank good champagne to celebrate the night i found out my surgery was scheduled!!
i hope you find the same relief and excitement once you have chosen a path and set your course.
good luck!
xx
carrie
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Hi Andrea and welcome!
Maybe when you're done slapping that first radiologist of yours, you can go help Carrie kick her old doctor in the shins!! Sounds like they both deserve it!
I'm glad you at least have a diagnosis now. I know that can feel like a relief after so long.
Good luck at your doctor's appointment - I know it will go well, because October 1st is a very good day!! ;)
I know these things are rare, but my dad had one too. How does that happen? I am beginning to think they're not as rare as the medical community thinks - just terribly misdiagnosed!
Lori
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Hi, Andrea ;D
I'm sorry to hear you were misdiagnosed - it happens more than you'd think - but I'm glad to hear you finally know what's going on.
Welcome to the forum. I think you'll like it here. Don't hestitate to ask us for advice, opinions, or information - we're not shy and we'll answer just about anything ;)
If you haven't already, you might want to contact the ANA and ask them to send you some AN literature - it's fascinating reading and it's written in very basic terms - so even people like me can understand it ::)
Jan
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Hi Andrea,
Welcome to the club no one really wants to join. I'm sorry to hear you have an AN but glad you finally have the right diagnosis. I think you'll find this forum a wonderful source of information and comfort. We also enjoy a bit a hilarity now and then in AN Community which sometimes spills out to other areas, but Phyl keeps us in check. Feel free to ask any questions or just vent -- we are all here to support you in any way we can. As Debbi said, we aren't doctors, or most of us aren't anyway, I think there are a couple of doctors in this forum, those of us who have been where you now are can offer advice based on first hand knowledge. I like your idea of having chocolate to calm down -- there's nothing like a good piece of chocolate. Good luck with your appointment on October 1 and keep us posted.
Best wishes,
Wendy
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Hi, Andrea:
Allow me to finally get to the front of the line and add my somewhat belated welcome. :)
Obviously, we can all sympathize with your aggravation over the radiologist's astounding inability to see a 2.2 cm AN on your MRI scan. Unfortunately, you're not the first AN patient to have this unpleasant experience. However, now that you have the AN diagnosis, you seem to be moving forward with alacrity. Your October 1st appointment will be important and, as you noted, give you some direction. Depending on it's exact location, your AN is still small enough for radiation, so that may be an option, along with surgery, of course. You seem to be well aware of the benefits of this website and these forums so I expect you'll be posting messages in the weeks ahead as you continue on your 'AN journey'. In the meantime, try to refrain from slapping the crap out of inept radiologists. ;)
Jim
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Welcome Andrea!
I hear your frustration and can totally relate. My AN went misdiagnosed for 10 yrs. My ENT put a tube in my ear (I did not loose hearing as a symptom, just a full feeling among other things), when 1 year passed he wanted to put in a sinus window. HELLO I HAVE A BRAIN TUMOUR SILLY GUY! I was very frustrated and a bit angry thinking maybe I wouldn't have suffered facial paraylis IF someone would have found this years ago. I told my GP that I had a full feeling in my ear and pain behind my ear, like an ice pick. I told him I thought I had an acoustic neuroma (based on symptoms and research I had done) he told me there is no pain associated with an AN. Honestly I tried to ignore it like I was the ringing in my ear. It wasn't until I lost my balance in front of my kindergarten students that I thought hmmmmm I think I am in trouble here. I pushed my GP to send me to a neurologist and he said it was going to take 10 months to see a neurologist to have an MRI (remember my GP didn't think it was important). Anyway my husband just about lost it and took me to emergency in Toronto (we live in a small town north of Toronto) when I had more trouble, and that is how the ball stated rolling then the discovery. I TOTALLY understand and have finally let go of those negative feelings - it is not good to harbour bad feelings when you are trying to fight for your health and recovery. Move on and fight hard to get better! Don't look back just look forward. Deadly emotions are just not worth the energy, you need the energy for what is coming up.
Be strong, you can do it and we are here for you! It is hard to believe it but things will look better once again! I hope that my doctors have learned a thing or two ~ listen to the patient.
Arm yourself with information.
Michelle ;D
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WELCOME TO THE BOARD....
I do find it strange that you know somebody else with one. Like somebody here just mentioned. I dont think that its as rare as the medical community makes it out to be....misdiagnoses, its not everyday people get an MRI on the brain. Also some AN's dont grow/or bother people so they dont even know and chalk it all up to allergies.
LOL!!!!! Very HAPPY you found us....
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Hey Andrea... well, I can see that the "welcome wagon committee" has greeted you in fine form ;)... but.... not going to add anything here as I can see everyone is providing you a perfect welcome and started to share info/experiences... and as you note, you've been "lurking" for a while studying up... but.. will say this... glad you found us.
Again, welcome :)
Phyl
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Andrea~
Well, it has all been said but not from TEXAS - where everything is bigger - even the welsome!! ;D Know that we are here for you. If you would like to contact me or need someone to chat with, feel free to PM me your number! Also, you can check out my blog (address below) & see what my life is like almost 13 years after AN surgery!
K
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Hi Andrea,
You won't be a "newbie" for long. We all seem to get through this, so you will as well. This a great place to vent, to ask questions, and to help others. And of course, keep us posted.
Be well,
Marci
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Hi Andrea=Welcome.I am fairly new here too.Thank God for this site though.I am 42.
I was also mis diagnosed for 10 years.First it was inner ear infections then it was meniers.i even had an audiology testdone that was abnormal but everything except an MRI.
I am on the road to recovery now but at least w/ all the friends here i know i am far from alone. :)
all the best ,cindy
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Another TX welcome to you, Andrea,
There are so many people who can help you here. I myself have to admire your tastes...champagne and chocolate!You have every right to get angry, and then you can figure out what to do next. I was diagnosed with an AN in Aug., but the House clinic said it was a meningioma. I'm going to get one more opinion and then I'm going to boot this hitchhiker out of my head. Keep us posted on how you are doing. I haven't seen anyone ask about something that someone hasn't been able to address. Good luck!
Maggie
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Hi Andrea,
What a nightmare to go through with the misdiagnosis. The more I hear of these stories the more common they become. I was misdiagnosed for 2 years and needless to say I have changed primary care doctors because I need one that can take my complaints seriously. This site is part of my daily life now, reading stories, gathering more information, I can't imagine what I would have done without it. I am sorry you had to join but be thankful this group is here for support.
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Wow, thanks for all the welcomes! This place is awesome! Just from reading and looking around, I have like 3 pages of questions to ask the doc next week, so thank you all so much.
I think I can work this AN thing for quite a bit of chocolate from my dear husband, LOL. Godiva extra-dark chocolate truffles come to mind. Just kidding! He keeps my supplied with those anyway.
I'm sorry we all had to "meet" this way, with this "thing," but I am very glad to meet all of you. Trust me, I'll be posting and asking a lot, I'm sure.
Off to the zoo today with my kindergartener and her class, the bus ride should be interesting :o and I"m bringing my walking stick "just in case." Hope everyone has a great day!
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Andrea -
I've been to the zoo with a bus load of 5 year olds - the "walking stick" might come in handy for more than walking! ;)
Just kidding! Definitely work the AN for all the chocolate it's worth! And be sure to share it with your new forum family!
Have fun today and enjoy yourself!!
Lori
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I'm late w/ this, but Hi and Welcome!
Chocolate is my favorite way to resolve problems!
Glad you found us - we'll be watching for your questions, concerns and updates!
Enjoy your day at the zoo!
cindy
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Hi Andrea, Glad you are on your way to recovery. In case you are interested in learning more about radiotherapy as an alternative, I have described my own process deciding on a treatment for my 2.6 cm AN -- and also my experience post-treatment -- in the website below (in my signature line). Sounds like you've made great progress with your research. Please check in here often and keep us posted on your progress. Regards, Francesco
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Great site FB. VERY well written and extremely helpful for newly diagnosed. I chose surgery and have no regrets, I needed it out! I am suffering some residual effects but am confident all will be well. I feel it is important to arm yourself with information and make the right decsion for you.
Take care.
Michelle ;D