I think I figured out how long my AN was in my head........

[Obita]

Hi Everyone:

I decided to give an old recliner away to charity. While dragging it out the door the other day I thought: I wish I could have used the massage on this chair. Then, to myself I say: Holy crap Kathy, your AN was growing back then!!!

In about 1989 I bought this chair because it had the massage.   The minute I got it home, I sat in it, turned it on and almost threw up.  I tried to use it 3 or 4 more times with the same result.  So, I shoved the cord up inside it and used it as a plain old recliner for all these years, never wondering why the massage gave me the wonky head.

I bet my AN was growing for at least 16 years before I was diagnosed.   I never put the chair experience and the AN together until last weekend.....

Had I been smart enough to question it back then, I can just imagine how that doctor appointment would have gone.........

Kathy

[TP]

I actually had a knot on the back of my head for years and kept asking my Dr what he thought it was. He said he thought it was part of the shape of my head. I asked my neurosurgeon before my surgery last summer what he thought it was and he said the same thing. Well after my AN was removed I noticed about a month later the knot in the back of my head was gone. As far as I am concerned that knot was from the tumor and if that was the case it had been in my head well over 10 + years.

[Jill Marie]

I was wondering yesterday why know one bothered to figure out why I was loosing my hearing when I was tested in the first grade.  The loss was severe enough that they sent me to another town to be checked, all they came up with us that I did indeed have a loss of hearing.  I was tested year after year and all they ever said was I had a loss of hearing.  It got to where I would skip school on the day we were to be tested so I wouldn't have to be singled out again and called for another hearing test.  When I was 35 they found I had a Facial Nerve Tumor, so the Tumor was at least 30 years old by thenl. 

The reason I thought about it was because a guy my husband works with has a tumor the size of an orange, they removed his colon will most likely take one of his legs.  He complained of severe pain over the last two years but they told him it was from a crushed vertebrae, turns out it was the tumor.  He's a single father of a 10 year old girl. 

It's probably best that I didn't know about my tumor sooner as I would have worried about it as it grew bigger.  They wouldn't have removed it tell it was causing facial problems which was shortly before I had it removed.  Then again who knows for sure?

Isn't it amazing how the puzzle fits together once we have all the pieces!  A massage chair that should make you feel better actually makes you sick, a knot on the back of your head that others don't have, headphones that only put out music on one side?  I realize doctors are only human and don't have all the answers but it's still frustrating to know we had symptoms years before the tumors were found. 

Jill Marie

[HeadCase2]

  I suddenly lost hearing in my left ear in 1980, and it was misdiagnosed as hearing loss from loud noise exposure.  AN was diagnosed in late 2005, so the AN was there for at least 25 years before diagnosis.  I'm almost glad that it was not diagnosed properly in 1980.  I may have been tempted to have it treated when the treatment technologies were not as advanced as they are now.
Regards,
 Rob

[okiesandy]

Intresting subject. When I was a child I could spin in circles for long periods of time and the only thing that happened was the world would spin and I stayed on my feet. I was also a competitive dance skater as a pre-teen and teen ager. Perfect balance.

When I was 40 I got a divorce and learned to do country western dancing. As time went on I got worse and not better at spins. Three turns and that seemed to be it for me. I would stagger and clutch onto my partner. I was so frustrated.

My tumor was discovered when I was 62. The doctors said I had it for maybe ten years. No one can guess this. Some tumors grow at a steady pace and some stay the same for years and then grow and every combination you could think of. I was told my tiny 1 CM (To me a huge thing growing in my head) would only grow about 1 mm a year. Mine grew 7 mm in nine months. To my way of thinking I think I had it at around 40 and the just didn't do much for a long time. Must have been resting for the big event. My guess is 20 years. Also, at about 40 years old I started having a light hearing loss in my left ear. Still in the normal range, just less than the other ear. A year before the discovery of the AN my hearing loss was slightly less then 30 db. Then a year later 100% loss.
So much for what doctors know. That's my story and I am sticking with it.

Sandy

[Omaschwannoma]

Interestingly enough my tumor could've been in there since childhood as for many years growing up I had very weird spells of dejavu, head pressure, legs would give out and couldn't hold my bladder.  This continued into my adulthood and in 1991 I had a freightening experience.  At an intersection well traveled by me I suddenly did not know where I was.  This stayed with me for quite some time.  I kept driving towards the sun until the road ended and knowing my house was north I made the turn and continued to drive.  Scared stiff while driving, a little while later I suddenly recognised where I was!  Sheesh!  I repeated this experience to my GP and he immediately thought "brain tumor" and ordered MRI but without contrast.  MRI showed nothing, but I'm wondering if there would've been something with contrast?  Anyway, 14 years later from the 1st MRI, numerous doctor visits for very scary moments of anaphylactic type reactions, lots of humiliation from ER docs diagnosing me with anxiety, other docs poo pooing my symptoms as female hypocondriac, and ENT telling me my hearing loss was due to the concerts I attended 20 years prior!  So, in 2005 when my daughter finally convinced me to go for a hearing aide is when a different ENT doc ordered MRI with contrast and BAM there it was! That's my story and I'm stickin to it too!

[Betsy]

This is a very interesting topic.  I can trace my earliest symptoms back at least 11 years, and if you believe the 1-2mm growth per year theory, that would have been about when it started growing.  When I finally went to the doctor for vertigo, I was told I was having panic attacks but I knew that wasn't it.  Being the pushy broad that I am, I rejected that diagnosis!  When they finally figured out it was an AN, I was both relieved and horrified.

What a strange trip this is!

[Pembo]

I had a bout with vertigo 14 years before diagnosis. I'm wondering if that's when it started. I had another bout that lasted six week,  3 years before diagnosis and the doc called it labryinthitis. I was very persistent with him as I just felt there was something more wrong. But before he suggested an MRI or anything the dizziness disappeared.  For six years prior I had shoulder pain. It often felt like a crick in the neck or I slept wrong. Since I now know my tumor was pressing on that nerve, I can make a good guess. I have definitely looked back and can see all the symptoms unfortunately none were bad enough to warrant an MRI.

[jacobs]

I was wondering yesterday why know one bothered to figure out why I was loosing my hearing when I was tested in the first grade.  The loss was severe enough that they sent me to another town to be checked, all they came up with us that I did indeed have a loss of hearing.  I was tested year after year and all they ever said was I had a loss of hearing.  It got to where I would skip school on the day we were to be tested so I wouldn't have to be singled out again and called for another hearing test.  When I was 35 they found I had a Facial Nerve Tumor, so the Tumor was at least 30 years old by thenl. 

The reason I thought about it was because a guy my husband works with has a tumor the size of an orange, they removed his colon will most likely take one of his legs.  He complained of severe pain over the last two years but they told him it was from a crushed vertebrae, turns out it was the tumor.  He's a single father of a 10 year old girl. 

It's probably best that I didn't know about my tumor sooner as I would have worried about it as it grew bigger.  They wouldn't have removed it tell it was causing facial problems which was shortly before I had it removed.  Then again who knows for sure?

Isn't it amazing how the puzzle fits together once we have all the pieces!  A massage chair that should make you feel better actually makes you sick, a knot on the back of your head that others don't have, headphones that only put out music on one side?  I realize doctors are only human and don't have all the answers but it's still frustrating to know we had symptoms years before the tumors were found. 

Jill Marie

Jill,this disturbs me that you could have had your tumor for that long...I have a 7yr old daughter who has been getting dizzy spells on and off and complains of a "buzzing"in her ear once in awhile.We did take her to a doctor 2 years ago and they didn't take it any further.I guess you can never be too careful and after reading your comment I am going to start with writing down when she complains of these symptoms.It's a fine line between being overprotective and not careful enough... I hope that our family never has to go through another AN again...
Jacobs

[Boppie]

This topic has made me think back...I remember when I first noticed balance problems.  In 1998 we built a new home.  I had a landscaper put in with flat rocks for a pathway along the side of the property. I realized I couldn't walk along the path without tipping and flailing my arms about.  We had to shove the rocks closer together and fill in the gaps with extra rocks to support my steps better.  I must have been working on imbalance a great deal in 1998.  It makes sense that in 5 more years I was climbing the house ladder to paint the high gable eaves, and sliding up and down the garage roof to paint the gable end.  So, 5 years went by while the balance compensated.  We discovered hearing loss in the last 4 years before the tumor diagnosis.   

I believe the tumor was with me for at least 15 years.

[Denise]

Don't know if this is true or not.....

My boyfriend, Darren, has surgery last Friday to repair a ruptured tendon in his left arm, and we were telling the nurse about my ordeal. And she said that she read people are born with AN's and for whatever reason some grow and some don't but she said it probably has always been there.  Has anyone heard of that before?  I did read that 3% of autopsies done in America show people have AN and never had any symptoms from it. 

Interesting topic.....

Denise

[Meagan]

All these stories just opened my eyes.  I had hearing loss when i was llike 6 years old now am 25 and they thought it was just hearing loss and i got a hearing aide.  I even had ear surgery at Childrens Memorial when i was in 4th grade.  I had to have mri's when i was little so i do hope they didn't misdiagnose this.  What a disturbing thing but it goes to show you how helpful this website is.

[Jill Marie]

Jacobs - I really hope that your daughters dizzy spells & buzzing in her ear has nothing to do with a AN.  There are many things that could cause that besides being an AN.  I know that I worry a lot more about every medical issue that comes up than I did  before I had the Tumor.  99% of the time I worried for nothing.  I too would keep track of your daughters comments on her hearing and check with her doctor and tell them about your concerns.  If they think they are unwarranted without checking it out try another doctor so you can rest easy.  Hope all goes well, Jill

[neal r. lyons]

very very interesting stuff! I'm 60 now and was standing in by brother's kitchen about 2 years ago and perceived instant loss of hearing on r.side(diminished but not total)   since 3 cat scans showed nothing during the past 3 months but the MRI with contrast showed the acoustic neuroma 2.6x2.8 i'm a big believer in the MRI with contrast!  thanks to you all for your input
                                                                                                                       God bless,
                                                                                                                        neal