AN with no symptoms

[Nancy Drew]

OK, I am so confused.  AN was diagnosed in Dec. 2005 when ENT sent me for a MRI due to severe vertigo (dizziness).  Small AN 4mm x 5mm.  Sent to a specialist who said the dizziness was a migraine without the actual headache.  After not having the dizziness for over two months, I started having it again. But this time I am having the headaches that the doctor said were missing last time!  Had a hearing test today, and hearing is normal as always.  Just don't get this whole migraine without the headache, and then dizziness with the headache.  This doctor says I don't have any symptoms from the AN, but what's up with the dizziness and headaches.  Do you have to have hearing loss before any other symptoms show up?  I am now thinking I should try to find out why I am having the migraines since the doc says they aren't related to the AN.  Weird thing is that I have a long, long history of migraines, but nothing like these.  In fact I had gotten the migraines under control once I got my hormones straightened out.  So, according to this doctor I have an AN with no symptoms.  Does anybody buy this?  I hope he is right.  No one in their right mind would want to have any symptoms, but then again I don't want to ignore any if they are there.  I have a feeling that this wait and watch mode is going to be mentally challenging.  I have my second MRI in June.  Guess I'll just "wait and see" and hope for no growth!!!  Also, if there is no growth after a couple of MRIs, do you still have to get them.  Or can you at least spread the time in between out?  Thanks so much. 

[Battyp]

Nancy I hate to burst your doctors theory but...

I suffered from migraines for years, had found neck surgeries, botox injections and nerve blocks to get them under control and I had migraines start up again right befor my ear started ringing.  What I didn't realize then that I do  now is that the pain was NOT the same as before.  I kept getting told it's just your migraines take your meds.  After I took decadron and got some relief and could analzye I realized my head pain was not the same as before.  It did mimic a migraine in the fact that I felt like my eyes were going to explode, I had intense pressure from the base of my skull going around to my eye socket and I wanted to be sick, couldn't tolerate light or sound.  I honestly think the symptoms for an AN are so unique to the individual that the doctors can not easily say that our symptoms are or aren't related to the AN.  If you do a survey of all of us with same size AN's on same side of skull we all have different symptoms so how can the claim this or that is or isnt' AN related.  I had one neurologist tell me that my AN did not cause my headaches prior to removal.  Then why did they stop after taking the decadron prior to surgery and I've had no headaches or migraines since? 

You know you better than anyone if you don't feel you're getting the right info seek a second opinion by someone who sees AN's on a more frequent basis.  If you don't' have tinitus then consider yourself blessed! 

That is just my two cents worth!

[Sue]

I think my first symptom was the tinnitus. I guess the dry mouth that I wake up with is also a symptom. Right?  Do you guys have that "can't hardly open my mouth because it's stuck together" thing in the night, or morning?  I actually started having that about 7 years ago!  But then, that could also be allergies - sleeping with my mouth open because I can't breath sort of thing.  But the inside of my mouth, on the left side is different, and the left side of my tongue feels like I mildly burned it on hot food.That wasn't there 7 years ago. I am thankful that I don't have headaches or dizzyness, although I have a tiny bit of dizzyness.  I notice it if I move my head fast or certain other movements will make me a little off-balance. But not to the extreme. First I was hoping that treatment would lessen my symptoms, and after reading so many posts, I am really hoping that they just don't get any worse!!

[Gennysmom]

I have to concur with Batty...it may be frustrating, but symptoms and side and size seem to have no correlation between people.  My symptoms are 16% hearing in my right ear, tinnitus, and some feeling of fullness in my ear some days...not all days.  I remember seeing someone mention a quick searing pain in the ear, and that happens to me maybe once a year, but I never thought anything of it because I get that in various points of my body on occasion.  Those are my only symptoms...so you'd think I'd have a small AN, right?  It's 3.1 cm, not so small.  The doctors seem truly shocked I have no other symptoms.  I'm not dizzy, I don't have vertigo, I have full facial function, nothing's dry.  I used to get migraines in my twenties, but in the last 10 or so years, I only get tension headaches...so maybe the AN is keeping me from having migraines?  I know this info doesn't give you anything solid to work from, but I think that's the one commonality we have...each AN is different.

[matti]

Nancy - You don't have to have hearing loss before any other symptoms show up, my hearing was perfect until the day of my surgery. My symptoms were fullness in the ear, periodic tinnitus, slight numbness in my gums and cheek and felt like I had burned the left side of my tongue and dizziness. I have suffered with migranes since my late teens, but noticed they were more intense and different with the AN. They are better since surgery. Interesting how our AN's affect each one of us differently.

I think it might be worthwhile to get a second opinion, since you are watch and wait.

Gennysmom - I too used to get the intense stabbing/searing pain that would come out of no where and just drop me to my knees. It only lasted for a few seconds, thank goodness!

[Gennysmom]

Matti, yes, very quick, but OMG, so painful.  I get the same thing in my bellybuton....like it's attaching to my inner organs and then ripping apart.  I'm not much of a worry wart, so I just always figured it was a weird misfired electrical signal or my ear fighting an infection or something.  I'm sure now it's from the AN, but if it was my only symptom I'd wonder if it had any correlation. 

Everyone seems to think that my lack of symptoms is a good thing, that I'm already compensating so that when the tumor is out/nerve is severed, I should have an easier time because probably I'm using the left side for balance already.  We shall see.  I'm hoping for the best, preparing for all the other possibilites. 

ND, I agree about getting other opinions and I don't envy the watch and wait.  Yours is plenty small enough to give you a full range of options and plenty of time to research them, and this is a great site to do that.  Whatever you do, be confident and at peace with your decisions...if it doesn't sound right, it might not be. 

[Battyp]

?  Matti is your tongue still having the burning sensation?  My tongue is numb and that is how I describe it..just wondering if it will possibly get better.  I'm having lots of face tingles today...crossing my fingers and toes and hoping it's on the up swing.

[Boppie]

Other than slowly advancing hearing loss at age 63 which is not unheard-of   I had no symptoms, none.  I had no health issues other than aging if one can call that an issue.  Aging is not a big deal for me.  I waited 10 weeks for surgery and had no fears.

Since my surgery I have thought about not treating eye and allergy problems but my health record was clear, had checkups and all of the routine tests regularly.  My biggest bogyman remains to be a cancer. 

I agree, it is so stressful to one day discover you have a benign tumor that can't be ignored.

Today, 15 weeks post-op, I have some tongue sensation oddness, that's all. 

[Battyp]

Boppie, you're recovery has totally amazed me.  I'm so glad things went to well! 

[Nancy Drew]

Thanks everyone for the helpful info.  I am changing to another primary care physician in May, and I hope she will give me a referral to another doc who might know more about these ANs.  The doc I saw said he sees 45 cases a year.  Is that a lot?  Does that make him a specialist?  I have forgotten to ask him if he does surgery--guess that is an important thing to find out.  He did say however that he recommends Gamma Knife most of the time if the AN grows.  These migraines really are different from the ones I've had in the past, and they are really bothersome although they are not the worst I've ever had.  The dizziness and wacky blurred vision come on, and then in about 15 minutes BAM here comes the headache.  Sometimes I get nauseated, have sensitivity to noise and light, and I have noticed that my mind gets foggy.  I guess these are classic symptoms of a migraine.  I have also noticed that my balance is off a little.  The doc did say this could be from the AN, but he has really tried to play down the whole migraine business.  I have been under a lot of stress for the past six months (even before my diagnosis), and my psychiatrist (who treats me for bipolar disorder which is fairly well under control) says the migraines might be from the stress, but he wants me to get it checked out because having this happen every day doesn't feel right to him either.  He never treats me like I'm "crazy" and making all of this up so it is nice to be believed.  So, anxious to see what the second MRI (six months after first one) has to say as far as growth.  I guess I need to seek more info about treatments, and I appreciate all of the info this forum has to offer.  Thanks, Nancy Drew

[ppearl214]

Hi Nancy:

Oh, hang in there! We're here for you!  I know this can be an exceptionally trying time as you start your research... I outlined my research publically on this forum (PreTreatment) so all could see how I came to my decision process... and final decision.  Know that the first thing I learned was... too much info can be dangerous but being "well-informed" makes you the best patient advocate you can be!

There are many radio-surgery options (as you note, GK, I had CK, FSR, etc)... many here have had the micro-surgical treatments. I'm glad that your dr is trying to help point you in certain directions and that you do have options. Many don't, so please see yourself as fortunate that you do. Know that the info can be VERY overwhelming and too much to absorb.  Regardless of how you approach it, all I can suggest is take your time in reading. Read posts here, read the Treatment forums (Micro-Surgical and Radio-Surgery). There is a wealth of info in each forum. Private emails are terrific. Posts in threads are awesome. Regardless, know that we are here.

Phyllis

[jamie]

Hi Nancy, if your doctor happens to be correct and the dizziness and headaches are not related, it may be possible that you don't have an AN, but a lower cranial nerve neuroma like myself. One neurosurgeon was sure it was an AN after reviewing my films, but everybody else said no it is on a lower nerve (hard to tell which one). The MRI images look exactly like an AN, but they were very sure it wasn't, and they're the experts, lol. Anyway, mine had no symptoms either, other than an earache from eustachian tube dysfunction that my ENT said was probably more related to having alot of ear infections and tubes when I was a child, but oddly the earaches went away after CK. Lower nerve schwannomas don't usually have symptoms, and nerve troubles are usually not noticed unless both sides are affected. They are not usually sensitive like the balance or hearing nerves to the tumor or radiation, which I am thankful for.

[HeadCase2]

Nancy,
  If you look through posts on this forum, you'll find other people who had balance issues as some of their first symptoms from an AN,  rather than hearing loss.  As many have said, symptoms can very quite a bit from individual to individual.
  Migrains are a complex issue, as you know.  Battyprincess makes a good point in asking if your current migrains are different than the previous ones.  Make sure you talk with a very experienced Neurologist, at a tertiary or teaching hospital.  The're more likely to have seen symptoms like yours, and be able to separate out AN issues vs non-AN issues.
Regards,
 Rob

[Robquinn9]

My wife's symptoms:

1. facial numbness - rt side
2. tinnitus - rt side
3. intense headache like stabbing sensation behind eye - rt side

Our neurosurgeon said the 1 & 2 were the result of the AN, but not 3.  But he'd "take credit for fixing #3" if it went away!!

Thankfully, all 3 have subsided after her 3/13/06 surgery.

[ppearl214]

Rob, fab news on Amy! Please send those hugs to her (and keep one for yourself!) from me, ok?

1 week post Cyberknife treatment....

1. Facial numbness (slight), cheekbones down to chin (rubber feel but can still feel it)
2. Tinnitus has now gone from left AN ear to both ears.  More constant than pre-treatment
3.  "fullness" in head and ears (like a balloon filled but won't pop)
4. Balance is definate issue but just walking slow and taking my time. Also due to my Chiari 1 Malformation, already use cane but balance is a bit more off since treatment.

Nan, anyway and all ways we can share info with you, glad to help!

Phyllis