Small ANs vs. Big ANs

[Nancy Drew]

Do bigger ANs cause more problems than smaller ANs like mine.  In other words, if I'm just carrying around a "baby" AN, then maybe I should just wait and watch a little longer.  I don't like the hearing loss (had some this past year) even though it's not the worst, but I also know that I don't want to lose any more of my hearing.  Do you have a better shot at maintaining your hearing if you zap this thing now when it is itty bitty (I'm leaning toward gamma knife)?  Also, my AN didn't grow for over 2 1/2 years after diagnosis.  Now it has grown one mm.  What are the chances that it will grow more and how much.  My doctor said at my age (49) it will probably continue to grow.  Anyone had small growth, then none for awhile, and then growth again.  I guess these are unpredictable.  I asked my doctor what would he do if he had this AN in his ear, and he said he would do the gamma knife.  I would hope he was being honest with me.  Thanks.  Nancy

[OMG16]

It is my understanding that size does not matter and everyone is different with symptoms or lack of symptoms.  I also have been told that 1mm of growth is actually within the plus or minus and could just represent them getting a new and upgraded piece of the MRI, the angle of your head ect.  Did the Dr recommend waiting to see what an MRI in 6month to 1year and then deciding?  Hopefully more will post and give you there advice.  16

[Nancy Drew]

16, Yes the doctor said that is an option, but his words stick in my mind about if it was him he would go ahead and get the gamma knife.  I would hope he knows more than I do.  As for the MRI, I go to the same place every time, and they are using the same machine.  In fact the same guy always does my MRI.  When I looked at my MRIs from the past years (this was my 5th) the AN has always looked the same.  This time it is so clear that the size and shape have changed.  It looks like a full moon now whereas before it was a half moon.  The hearing loss is what worries me the most.  I knew six months ago that my hearing had gotten worse.  Wish I had gone to the doctor then, but what difference would it have made since these things grow slowly anyway.  I'm just going to be as patient as I can for now.  The doctor is presenting my case at his conference in a week so I'll me getting some expert opinions.  I am sure it will all come together.  Nancy

[OMG16]

Well I will be waiting to hear what they say after next week.  It does sound like you have had some changes in the shape and size of your AN and it also sounds like you are starting to have some peace with the way you should proceed.  Please keep me posted as I will be anxious to know what you and your Dr's decide. 16

[leapyrtwins]

Nancy -

size matters from a treatment perspective - some ANs are too large to watch and wait and some are too large to treat with radiation - but there seems to be no correlation between severity of symptoms or which symptoms the patient experiences and the size of their AN.   Some patients have large ANs and small symptoms and vice versa. 

Location of the AN can be more a factor in symptoms than size.  For example, if your AN is pressing on your facial nerve it might cause facial numbness.

Jan
   

[oHIo]

My AN was 2cm (a small medium tumor) but presented some major difficulties.  It left my facial nerve looking like that of someone with a much larger tumor.  The position of the tumor left me with no choice of surgical approach, (MCF or retrosig would not allow the doctor to get all of the tumor) so I sacrificed 100% hearing discrimination via a translab. 

My tumor was also on my brainstem and had to be peeled off.  Location of the tumor can be as important as size in some cases.  ANs seem to be like snowflakes...no two are alike.

Deciding on which treatment option (or watch and wait) is the tough part.  Hang in there.

[Jim Scott]

Nancy:

As you can see from some of the previous replies, AN size is a factor but the exact location of the AN is just as important when considering the type and timing of your treatment, be it surgery or radiation.  If you are actually experiencing AN growth, then timing could be critical.   I didn't have a small AN or the option to choose my treatment (surgery was my only option) but you do.  That is a good thing and I can tell you want to use the option wisely.  It's pretty obvious that you're leaning toward Gamma Knife and that is certainly a viable option for you.  It is common to retain hearing functionality at the same or a slightly lower level following radiation.  However, I might consider waiting another six months (not a year) and have a new MRI scan to determine if growth is still occurring but of course, that is up to you.

I trust you'll make the best treatment decision and be confident with it, once made.  We stand ready to help to whatever extent we can.  I just don't want to see you allow fear, insecurity, doctors, AN forum members  or anything else unduly influence your decision.   Try to remain calm and focussed.  Don't put unnecessary pressure on yourself and I think you'll do just fine. 

Jim

[OMG16]

Jim very well put.  I hope that she does not let any of us sway her decision unduly.  I really try not to let my experience cloud my posts, however I do believe that the gut feeling is there for a reason.  I also believe that when you first find out you may need surgery is not the time to make that decision because all of us do react rather strongly to brain surgery with good reason of course.  I just wanted to clarify my position and did not take any offense to your post.  As usual we can always count on you for very good well thought out responses (minus the female emotional aspect LOL).  I also want to congradulate you on your new found position and the fame that goes with it.  They could not have made a better decision adding you and Steve.  16

[sgerrard]

I asked my doctor what would he do if he had this AN in his ear, and he said he would do the gamma knife.  I would hope he was being honest with me.

I thought I would post a link to a survey done in 2002 at Pittsburgh. It speaks to the question of what doctors would do if they had an AN.
http://www.acousticneuroma.neurosurgery.pitt.edu/docsurvey.html

Some quotes:

Case 1: "You are a 37 year-old neurosurgeon who presents with mild decreased hearing on one side. You have no tinnitus and no balance problems. Facial function is normal. An MRI scan (right) shows an intracanalicular acoustic neuroma and serial scans have shown a small amount of growth. Which management strategy would you choose for yourself -- observation; surgical resection; stereotactic radiosurgery; fractionated radiotherapy?"

Response: "The majority of surgeons stated that they would choose stereotactic radiosurgery for management of their small acoustic tumor (n=283; 43%). Only 122 surgeons stated that they would choose surgical resection of their tumor (18%). Fractionated radiotherapy was chosen by 2% of responders. Interestingly, 240 surgeons stated that they would continue to observe their tumor (36%) rather than undergoing any specific treatment at the present time."

The second case, with a larger AN, showed a shift towards doing surgery. Just food for thought.

Steve

[OMG16]

Steve do you know if that is consistent with the percentages for the lay person?  I was just wondering if the additional medical training that we do not have made a difference in treatment decisions or if it was just the same sort of thinking as we as people go through trying to decide.     16

[sgerrard]

OMG,

I don't know the answer to that. I think the researchers at Pittsburgh wanted to make the point that neurosurgeons themselves are often inclined to choose radiation for smaller tumors, so it is okay for regular people to choose it. It would be interesting to know what percent of patients are doing that these days.

Steve

[cmp]

Nancy--

As others have pointed out, the location of an AN can have as much to to with symptoms as the size. And symptoms can be intermittent (at least, in my experience, they have been).

Because my AN-related hearing loss 20 years ago was misdiagnosed, and the only other symptom I had prior to surgery was occasional bouts of vertigo (which I attributed in the months before surgery to an inner ear infection!), I would NEVER have guessed I had a large (5 cm) tumor. This time around, the tumor is much, much smaller, and again the symptoms are very intermittent (very occasional mild-to-moderate shooting pains in my face and teeth), so that I would have probably ignored them again if not for my history. In both cases, it seems, the location of the tumor has kept it from producing terribly bothersome symptoms.

I wouldn't worry about "what ifs" such as whether it would have made a difference to follow up sooner on your hearing loss 6 months ago, as the 1 mm growth the MRI eventually revealed had probably taken place by then. And I'd guess the report from the panel of docs this week will address how best to preserve your remaining hearing.

Glad to hear you are moving toward a treatment choice--sounds as though the entire decision will be falling into place before too much longer...

Hang in there, and keep us posted!

[fbarbera]

My experience with symptoms went something like this.  In April 2007, I started to feel some mild facial numbness.  Then, over the next month or two, I began feeling additional effects from the tumor -- full head, episodes of imbalance, increased facial numbess -- until I was diagnosed on July 19 with a 2.6 cm AN.  It was only after diagnosis that I realized why I had been asking people to repeat themselves so often during the past few years (turns out I had moderate hearing loss in the affected ear but hadn't realized it).   By August 22, when I was treated, the balance episodes were getting pretty intense.  So it's strange.  The tumor must have been growing for years without producing any symptoms.  And then fairly suddenly I did have symptoms -- and from then on they seemed to get progressively more obvious.  My sense is since the AN growth is organic, it shifts around and grows etc and can start touching upon nerves or other brain stuff that it wasn't touching before, producing new symptoms that keep evolving on a day to day basis.  That's how it was for me for quite a while -- it's only pretty recently (10 months after treatment with CK) that things have stabilized (with very mild symptoms). 

Hope this helps. 

Francesco

[Nancy Drew]

Fbarbera,

Your reply was right on target for me in that I also feel the AN is somewhat organic.  I feel like my AN shifts around too.  I have never heard anyone explain it the way that you did.  It was helpful to hear your reply.  Thanks.  Nancy

[OMG16]

Steve I am surprised you do not know the answer to my question.  I thought you knew just about everything LOL.  I think it would be interesting to know non the less.  16