ANA Discussion Forum
Archive => Archives => Topic started by: Nancy Drew on January 14, 2006, 12:40:44 pm
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Did any of you go to the doctor in the beginning with only the vertigo?MRI showed 4x5 mm AN.No hearing loss or other symptoms except possiblly some tinnitis (which has only just started) that doesn't bother me much at all.AN doc said vertigo is not usually a presenting symptom and might be a migraine headache without the headache.The strange thing to me, after taking this all in, is that I had the vertigo every day for over a month.It was happening about an hour every morning after waking up, and it lasted anywhere from 30 minutes to 2 hours.I had to wait it out,disabling.The spinning was like you see when you pull the handle on a slot machine.Sitting down helped some, but any movement at all, or even closing my eyes, would set it off like crazy.Whenever it was over I didn't have it for the rest of the day--like back to my regular self.Now that I have had time to absorb all of this (diagnosed one month ago), I just don't get what that vertigo was all about.Beginning to question the migraine theory.What do you think about the vertigo?
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I first had veritigo for over 6 weeks about 3 years before my dx. It went away on its own. 3 years later is came back and never left until surgery day. It definitely was my first symptom and the only one that caused me to go to the doctor.
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Nancy,
Everyone has different symptoms with their AN's depending on it's positioning in the head and what nerves it's hitting or pressing on.
The only symptom I had was a deterioration of hearing.
Larry
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Nancy, my first symptom was vertigo, although I don't think mine was as bad as what you're describing. The spinning/dizziness/lack of balance was what made me go to the doctor in the first place. When the typical inner-ear treatments didn't work, he sent me for an MRI and (happy day!) they found the AN.
If your experience is anything like mine, you'll have a hard time finding a doctor that will tell you that your AN and your vertigo are related. I saw five doctors (primary, balance disorders doctor, local neurosurgeon, and two radiation oncologists) before the neurosurgeon at the hospital where I had my radiosurgery told me that the AN was probably the cause of my vertigo. Prior to that, the doctors would say "what do you mean you're not deaf? We're sending you for a hearing test" or "there's no way the vertigo is caused by the tumor, come back in a week and let us blow some air and water into your ears."
Finally, the day before my radiosurgery, I asked the neurosurgeon about the vertigo and he said that, while it could be caused by something else, he'd be willing to blame the vertigo on the AN. He said that since we know there's a tumor sitting on the nerve in charge of balance, it's often best to assume that is the most likely cause.
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My surgeon definitely said that the vertigo was caused by my tumor. There was no question. The ENT that sent me for the MRI thought I might have an AN because of my vertigo coupled with facial numbness. I had no hearing loss. My vertigo was non-stop and by the end I could hardly get out of bed and nothing made it go away.
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Hi
I've had 2 ANs and must say vertigo was the first indicator in the second tumor. It was incapacitating for 3 or 4 days at a time. There were 3 separate occurences of this vertigo.
I know literature says ANs do not usually present with true vertigo but with more of a dizzy feeling. Nothing is ground in stone with these ANs.
Best wishes!
Russ
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Hi,
Our ANA/NJ Jan 2006 newsletter (www.ananj.org) has information/data about vertigo as an early symptom -- especially of small ANs.
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I started having intense dizzy spells at the age of 11; but they only would occur occasionally and did not last long. The last time I had one was in 1987 or so. In 1983 I was afflicted with an inner ear infection that knocked me off my feet for about a week. I woke one morning and the room was spinning and it stayed like that for days. It eventually went away. The doctor refered to it as "viral vestibulitis". I remember that it was building up to that for weeks before because my vision had been giving me some trouble.
After my recent surgery I realized that the tumor had been with me since childhood and that is why it grew to the proportions it did : 5cm x 5cm!! I'm lucky to have survived. My paternal grandfather died from a non-cancerous brain tumor in 1941.
Paul
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My first symptom was vertigo as well. It was especially bad when I was in bed and would suddenly sit up or turn over. My head felt as though it was going backwards. Sometimes when I was sitting or standing, the whole room seemed to tilt to one side. It was off and on, although the symptoms in bed were pretty much continuous. I also had a feeling of fullness in my AN ear (right). My ENT thought it might be sinuses but after it persisted she ordered an MRI. It revealed a 4mm AN. After two MRIs every 6 months, it had grown to 5mm and my speech discrimination threshold had diminished. It was one of those "I can hear you but I can't figure out what you're saying". I had middle fossa surgery at House on Nov 8, 2005. Apparently, because I had already been coping with unsteadiness, I had very little vertigo or dizziness after surgery. I was walking on the 2nd day and even reading. I did develop delayed facial weakness but it has almost disappeared except for incomplete blinking. I can close my eye though. The surgery revealed that the AN was 6mm.
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My first symptom was hearing loss and a feeling of light headedness for about an hour a day for a few days . Within 5 days, I had full blown vertigo, killer headache, no hearing in left ear and facial paralysis. All of that for a little 8mm x 6mm an. I had GK in August , a base MRI in September and I go back for another MRI in March.
This is my first message. But I've been avidly reading this site since my diagnosis in May. Great support and lots of answers.
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Minnkris,
Your outcome seems very strange. I am thinking of GK for my re-growth as i have read a lot of positive outcomes from it. Are your problems improving at all and what are you doing about them.
larry
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Hello Minnkris,
I am wondering if you perhaps had a viral attack after those first few days? Did a doctor see you at that time? What did he/she say?
Sounds like it to me but then that's what i had when my first vertigo symptoms showed up..... couldn't sit up in bed to eat for weeks... months of crazy vertigo.
A long number of years later i was diagnosed with an An. At the time of radiation it was just under 2 cm.
Best wishes in your treatment for your An.
Windsong
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I did see a doctor really quickly, of course everything was at its worse on a Saturday night, so I went to a Quick Care on Sunday Morning. They did prescribe anti-viral med and anti-biotics, I think. On Monday, I was sent to the emergency room at the hospital across the street from the Quick Care. Boy, do I wish I'd gone there first. But, anyway, I got a CAT scan, an EKG and some blood work at the hospital. They put me on a steroid pack and possibly that might be where I got some of the other meds. I really don't recall, I was really sick! Then I was sent to an ENT specialist, who ordered the MRI. I thought for a week and a half that I had a really bad ear infection, until the ENT told me there was no fluid in my ear and there never was. Anyway all I have left of the symptoms is about 30% hearing loss in left ear with tinitus, dry left eye and left side of tongue, and some balance issues. Not too bad for the way things started. Thanks for asking. The GK was a breeze.
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Vertigo was my ONLY symptom, and was very much as you have described. I was not able to do anything including driving a car for a couple of months, as my spinning was extreme. At times I had to hold onto the wall to walk! Doctor tried me on dramamine type med, no help, then on valium which helped a bit (of course I was sleeping because of it too!). ANs are NERVE tumors. They grow from the nerves that send messages from your inner ear to your brain. My tumor was affecting the message the nerve was sending to my brain and telling my brain that the world was spinning. Fortunately, the brain will start to compensate and the dizziness should decrease. I have read many postings where the symptom for a person's AN is dizziness and vertigo. Certainly, dizziness and vertigo can be caused by other disorders/diseases, but I would want to rule out an AN. I had FSR four years ago and had great results. Best to you all!
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Nancy, my first any only symptom was vertigo. I called it dizziness, but it's quite different to being dizzy. I have a 2.5x2cm AN left side. Guess i was lucky i had a good GP who sent me for a scan with only the vertigo. That was 6 weeks ago, now have a little tinnitus, but hearing is still great! I'm having retrosigmoid surgery in 3 weeks, Apr 26. It's a little sad that even tho my hearing is perfect i'm probably going to lose it, but 'cest la vie'! I hope everything turns out ok for you nancy :) stay positive!! ;D
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Kat,
Welcome to our club.
I know you are only 3 weeks away from surgery but have you considered all the options - are you aware of other options? such as radiation treatment.
Has your surgeon explained these two you?
Laz
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Yes thankyou larry, I've been well informed, and i've read up on radiotherapy as much as i could, nobody likes to 'have' to go thru surgery :P
Concidering i'm only 28, my AN is cystic, and possibly growing faster atm, Surgery is the best option for me. I'm also one of those people who couldn't stand leaving it in there for the watch and wait, it would drive me crazy, lol. I guess the thing that really turned me toward surgery is the fact that there are no long-term studies on radiotherapy, and i've got a good 50 years of life left in me :D or at least i hope so...... hehe.
Take care guys
Kat
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Kat keep the faith as with retro if you have hearing going in you should have hearing coming out! I lost mine before surgery so of course there was nothing left after surgery. I also lost my diabetes so I guess I can't complain too much. I think I lost my sanity too but hey that's another story! ;D
Larry with a tumor that size radiationtherapy isn't standard protocol especially if there is brain stem involvement like I had.
Keep us posted on how you do Kat we'll be sending lots of love and prayers your way! :)
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Kat, I know it's probably way too late for this, but:
1) There are some good studies about radiosurgery; and
2) If you want to go the surgery route, have you considered one that would possibly save your hearing?
I just wanted to throw that out there, even though I'm sure you've considered all relevant information and are comfortable that RS is the correct option for you. Best of luck!
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Retro is one of the surgeries that allows hearing preservation. It's not infalliable but it's a possibility when you wake up you'll still have hearing. I lost mine before surgery and once you lose it you dont' get it back >:(
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Whoops, my mistake. I was thinking that retrosigmoid was one where they "sacrifice" hearing. I see now that Kat threw a "probably" in there. I'll just shut my big yap now. Does middle fossa also seek to preserve hearing?
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It was also vertigo, and this was ignored by my GP. She suggested a change of eye glasses. She even gave me some pills that people takes before travelling , Gravol! She sent me to 2 different ENTs when I lost suddenly hearing on one side (in 2 days). One said that it may be related to allergies, or stomack trouble, when the tinnitus was added to the vertigo and loss, another ENT explained that I was certainely loosing some hearing and if it was only one side this other side would join soon. He imagined that, having been in bombardment during the war as a kids was surely responsible, and there was nothing to do. When I finaly knew, I realised that ANs were rare indeed. These specialists never had one in front of them. Lucky me! Knowing nothing then, one could have decided to operate and.. where would I be? It didn't go that way.
But it can happen.
ant
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Kilroy I do believe middle fossa tries to maintain hearing while translab you automatically lose your hearing as they remove all the ear innards. Someone please correct me if I'm wrong.
I just remember the first guy explaining everything and telling me they wanted to do surgery and remove my ear parts and not try to save my hearing which of course put me in a state...then before I left he told me I wasn't a candidate and had to have retrosig which would preserve hearing if possible.
Antoinette where are you from? Did you get treatment for your An? How are you doing?
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From what i've read, Middle fossa is more likely to preserve hearing, retrosigmoid a little less likely, and translab almost never save hearing. But none of them have a really good chance of saving hearing, or at least not over here in Australia, i hear you have some excellent surgeons over in America :)
Two weeks till surgery now, starting to get a little nervous, but would you believe it, my sneaky husband spent the last four weeks organising behind my back a surprise party for me!
It was the best party ever! around 50 people came, what a lucky woman i am to have so many people who care, and what better way to perk me up! :D I have lots of teddy's in pyjamas, a house absolutely overflowing with flowers, and a massive 'best wishes' card to cheer me up :D I feel very blessed.