Do all ANs grow?

[Nancy Drew]

I am 46 and diagnosed with 4mm x 5mm in Dec. 2005.  It was diagnosed by chance, I think.  Had a bout of vertigo, but doctor said not related to AN since I don't have hearing loss (he said that is the presenting symptom, not vertigo).  He never did give a definitive reason why I had the vertigo.  No more vertigo since beginning of January, and my hearing is fine.  Do you think this AN will grow or will it just sit there for the rest of my life without ever growing or causing any problems?  Have any of you had an AN diagnosed by chance (doc looking for something else instead), and then not having any growth or symptoms for a significant amount of time (years)?  Or have there been any of you who have had no growth for awhile only to have sudden growth?  I just keep hoping this thing is a fluke.  I don't deny that it is there because I have seen it on the MRI, but if it hadn't been found would it have ever been a problem anyway?  Just wondering if there is anyone who can relate.  I will continue to have the MRIs and hearing tests as recommended, but to be honest, I just wish I had never found out that it is there.  But, then I also know it is best to find them when they are small so they can be treated before causing too much damage.  Thanks for your help.  This is a much needed forum, but I find it hard to relate sometimes because I don't have any symptoms.  Waiting and watching is just nerve wracking, and to know that I will always have to be "waiting" blows me away.  Sorry to whine, but I appreciate you for listening.  Bless all of you brave people. 

[Heather010]

Hi Nancy:

My name is Heather, I am also watching and waiting. To answer your question do all an's grow. Cant say that I am 100% postive but I believe they do , some may grow at a great pace where others don't.I have been watching and waiting for going on 10 yrs and there hasnt been any change in the size(I go on Friday for my yearly MRI). I go for my yearly MRI's and thats it. I have no hearing in my right ear and this is the only sympton I have, no vertigo,no headaches, no tinintitus, or anything.Do I believe that I am one of the lucky ones as of yet you bet(sorry if this sounded selfish but thats the way i feel)

 I read another question you asked about denying that you have an AN, cant say that you can ever forget about it, but you can live, me having my AN hasnt stopped me from living my life normally, I know that it is there and have come to terms with that, but I do not let it live my life. I tell people when I want, and don't expect any special treatment from my friends and family. I am a true believer in the saying everything happens for a reason and I believe that this has happened to me to make me stronger and live the life I was intended to. 

I dont think you are whining I believe you are scared and confused , so I believe you came to the right place the vent your feelings as many on this site probably felt as you do now..

[jamie]

I think the short answer to the question is yes. All AN's grow, or else you wouldn't have it in the first place.  

However, some do stop growing, and some even shrink. Just remember it's not cancer, it's not gonna spread, and carry on as normal, try not to think about it. It's a benign growth, like a wart or mole. It's still small, so if it starts to grow a bit, you have options. If it doesn't, at least you know it's there and are on top of it. You're lucky you found it incidentally, some don't find them til they're too big and have no choice but to have surgery. Medicine is advancing quickly, and there may be even more new technologies that may be available if and when you decide to treat it.   

[Joef]

thats tiny !! definity a watch and see........ do an MRI every year .. , and decied at what size do something ...

until then .. party on as normal .. 

[HeadCase2]

Nancy,
  AN avarage growth rate, according to various studies on "known" ANs, can be from 0.6mm to about 2mm per year.  This is a average, so it would be hard to apply these rates to any particular individual.  Studies on cadavers have indictaed that perhaps 3 times the number of people are walking around with undiscovered AN tumors than the number of known AN tumors.  So the stats are in your favor.
  I agree with jamie that the state of the technology in treating ANs has improved, and will continue to improve.  By the time you and your Dr feel that you need to do something, better and less invasive may be the norm.  Hopefully you won't ever need to do anything.
  My hearing was affected over a two week period in 1980, which I now now was from an AN.  I found out about the existence of the AN 11/05.  There's no way of knowing whether the AN grew steadily over those 25 years, or began to grow more suddenly.
  One last comment.  From what I have experienced, and heard from others, symptoms can show up quite quickly.
Good Luck,
 Rob

[Kilroy1976]

I am 46 and diagnosed with 4mm x 5mm in Dec. 2005.  It was diagnosed by chance, I think.  Had a bout of vertigo, but doctor said not related to AN since I don't have hearing loss (he said that is the presenting symptom, not vertigo).  He never did give a definitive reason why I had the vertigo.  

I honestly don't understand why doctors refuse to acknowledge vertigo as a first symptom of an AN. Vertigo caused me to get the MRI that diagnosed my AN, and if you listen to stories from around this forum you'll find that we're not alone. In addition to the hearing tests, it may be to your advantage to take note of any future instances of vertigo that you experience. Good luck, and I certainly hope that your AN waits along with you.

[Joef]

I figure I had my AN for 20+ years (I'm 41 now).. looking back I had some problems with ringing in
my ears and loss of hearing .. but nothing to bad.. I never saw a doctor ..

but this spring .. I knew something was wrong ... my balance was off .. and the ringing got a lot louder ..
my heart would sometimes race .. I just could not relax ... I finally made a appointment ... I thought
I had some sort of ear infection ... sent for a MRI, thats strange ... came back positive. My GP told me
its not cancer ... and not to worry ... no biggie I thought ... and then I saw the MRI ... there is a egg in my head !!
Its time to panic! .. but after talking to my Yale doctor and to House Clinic . I knew I would be in good hands..
The point I was try to make is I was still ok at the start of July ... but by the end of July ... I was a mess, little things would tire me out ... it was all I could do to take the trash out to the curb ... but I'm ok now .. back to work .. and I can't use my AN
as a excuss with my wife to do chores anymore  

 

[Mark H]

Howdy,
I've been lurking for a while but ith this subject I decided to register. I've had balance problems and tinnitus for years. I was diagnosed with NF1 30 some years ago. I'm 52 now. For years my MRI's came out normal. A few years ago they thought they spotted something, but they were too small to be sure anything was even there. Next years' said stable 1 or 2mm nodular enhancement in right and left inner acoustic canal. They said it was most likely a normal vascular enhancement but wouldn't rule out the possibility of them being small neurofibromata. January's MRI, and they are sayint they could be very small acoustic neuromas. The dr's I've seen since don't diagnose them as AN's, but in our conversations that's what they are caling them. I was sent for a hearing test, left ear is normal and the right has a mid range loss. I'm not worried one way or the other about it, but it is a bit frustrating not to know for sure what it is growing in my head. So, as far as growing, it looks like in my case it's gone from nothing detected to 2mm on each side in about 3 years. Maybe I'll know more next year if I can get those little suckers to grow enough to be positively identified. 
Mark
 

[mountain]

It's my understanding that ANs are less likely to grow as we get older.  That's why, at age 55, I am a "wait and see" with a 1.5 cm.   

[targa72e]

Hi,

Most Grow, they grow at different rates, a small number shrink. Some people have large tumors with no symptoms others have small tumors and lots of symptoms. If you have no symptoms and no pattern to show that the tumor is growing then watching and waiting is a very good option. You never know you might be one of the lucky small percent that has a tumor that shrinks.

Study below

John

5mmx5mm (annoying little tumor that has made itself well known)



http://www.otology-neurotology.org/ANS/files/2005Abstracts.pdf
American Neurotology Society annual meeting, May 2005, Boca Raton, FL

A Comparison of Growth Patterns of Acoustic Neuromas With and Without Radiosurgery
Alex S. Battaglia, MD, PhD; Bill Mastrodimas, MD; Fred DiTirro, MD; Roberto Cueva, MD
Objective: To compare the natural history of acoustic neuroma growth to the reported growth rate of acoustic neuromas after radiosurgical therapy.
Study Design: Retrospective review.
Setting: Tertiary referral center for 3 million patients.
Patients: 104 patients with an average age of 68 who chose to have their acoustic neuromas managed conservatively with at least 1 year follow-up.
Intervention: Patients underwent serial magnetic resonance imaging for assessment of tumor growth for an average period of 38 months.
Main outcome measure: Growth patterns of untreated and radiosurgically treated acoustic neuromas.
Results: The average growth rate of the untreated tumors was 0.4 mm/yr. 72% grew less than 1mm/yr while 23% grew equal to or more than 1 mm/yr. 10% grew more than 2mm/yr. with growth being noted an average of 2 years after diagnosis. This represents a 90% “control� rate if tumor control rate is defined as less than 2mm growth/yr. Tumor regression occurred in 5% of patients with an average negative growth of -0.74 mm/yr. Tumor control rates range in the radiosurgical literature from 88% to 100%. Average follow-up periods in the radiosurgical literature are generally less than or equal to 3 yrs. Tumor control is not uniformly defined.
Conclusions: It is difficult to establish a significant difference between growth patterns of untreated acoustic neuromas and those treated radiosurgically. In order to establish a significant difference, there need to be well-established criteria for reporting tumor sizes and tumor control rates, and there needs to be longer term follow-up with larger sample sizes.

[Nancy Drew]

Gee everyone.  Thanks for all of the helpful replies.  It is amazing how helpful this forum has helped me.  Seems like it is best for me to just go on with life and not worry so much like you suggested Heather.  That's what I'm gonna do and just keep having those MRIs and hope for the best.  I must be one of the lucky ones for now to not have any symptoms.  It is reaffirming to hear what you had to say about the vertigo Kilroy.  I will continue to monitor because I really don't think it was a migraine symptom without the headache as the doc suggested.  Come on, having vertigo every day for over a month.  Something had to be going on other than  migraine because I have had migraine headaches for over nine years and never with vertigo.  But, at least it was diagnosed even though I don't really know what they were looking for with the MRI.  I have a lot more questions to ask the doctor when I see him in April.  Thanks to all of you I have more insight, and I appreciate every reply.  Have a good day!

[Kilroy1976]

Conclusions: It is difficult to establish a significant difference between growth patterns of untreated acoustic neuromas and those treated radiosurgically.

I'm not sure that I agree with this conclusion. I'll let others on the board fire away with studies and statistics, but I believe that "tumor control" after radiosurgery is defined as "no growth or shrinkage." This author defines it as 2mm/year growth or less. Quite a difference there, especially over time...

And a nifty tidbit from the CK Society:

"Imbalance and vertigo
Because AN most commonly arise from the vestibular or balance nerve, it should not be surprising that affected patients frequently suffer from some dysequilibrium (loss of balance). When the visual and other sensory systems are working normally, patients can usually compensate for the faulty input that comes from the affected balance nerve. However, patients have a greater tendency to lose their balance than normal individuals especially when walking and turning quickly.

Vertigo is much less frequently associated with acoustic neuromas than lesser disturbances of the balance apparatus. However, when this symptom occurs, it can be extremely disabling. The vertiginous patient experiences profound dizziness, even when at rest, which can be severe enough to mimic seasickness. Interestingly, vertigo tends to occur most often with smaller acoustic neuromas."

[luv2teachsped]

Nancy:  Vertigo was my first symptom also!   But they blamed it on my fibromyalgia!   I think they blame everything of Fibro!  It was a year later when I also thought I had an infection. At my daughters insistence I went to an ENT to have my hearing checked Ta DA!!  All my symptoms over the past year pointed to the An. luv2teachsped

[ppearl214]

Hi Nancy,

Same boat as you (watch/wait).  Last May, also "stumbled" onto my AN as you did. 

May 2005 = 5mm x 7mm
Feb 2006 = 6.7mm x 9mm

Yes, they grow however (for the most part), quite slowly. 

Don't have vertigo (some balance issues but not vertigo) so can't note on that, but great responses here thus far.  Hang in there... btw, I'm 45 and also have fibromyalgia (secondary to a few other issues going on with me).

Phyllis

[Mark]

I'm with Kilroy on this one. The fact that this "study" was done by neurotologist's ( aka surgeons) leads me to believe there is some degree of bias. it is certainly evident in the rest of the abstracts provided in this link.

The information in the results section is somewhat meaningful as a benchmark for the standard growth rates of an untreated AN, but they have have no direct experience or sample for those radiosurgery (hmm... maybe because they're surgeons and don't perform it). Rather they make a generalization on an undefined review of other studies for radiosurgery outcomes. Tumor control from everyone I have ever talked to is referred to by 0 growth or shrinkage of the AN. I have posted several times copies of studies from the University of Pittsburgh and other institutions with GK results in excess of 10 years so to refer to an average study length of 3 years seems irrelevant to me.

In the end , they really draw no conclusion and I'm not clear from the title what they expected to find based on frankly a lousy study model. They define the untreated growth well but do nothing do show where radiosurgery fails. In short, this whole study borders on a pathetic effort at best. Candidly, I don't get it

Mark