Small ANers ... why did you decide what you did?

[Keeping Up]

Sorry, I am going to have more questions than even i can imagine over the next 6 months (or maybe 5 years, for all I know).

I have a small AN - 5mm x8mm - it might grow, it mightn't grow.  Right now, it does absolutely no harm and I don't want the complications of any of the 'other' options.  I have the luxury of time.

So, have been looking at many footnotes, and just wondering - why did some do what they did?  Again, it is a personal decision.

Will also ask for an opinion, if on paper, you had a young-ish 37yr old (how did I even get that old) with a tiny AN, required income, mom of four little ones, what the heck would you do?  It would be interesting to see what other people would have done.  It would be also interesting to see what others would do in different sitautions.

Will save my next big question for another day.

[sgerrard]

I choose to get treatment because I was continuing to lose hearing. That is what got me into the doctor's office in the first place, and kept me at it as I tried all the usual sinus and allergy remedies (including salt water up the nose). Once I finally got the true diagnosis, it was clear to me and the ENT that I would lose the rest of my AN side hearing if I didn't do something. I suspect that most people who take action on a small AN do so because symptoms are developing and getting worse. Once it is clear that you will need treatment sooner or later, choosing sooner makes sense, to minimize damage to nerves. If it had not been causing trouble, I think I would have watched and waited. I'm not sure age would enter into it, although ANs are somewhat less likely to grow when you are older.

Steve

[Tisha]

Hi!

I think if I were in your shoes I would watch and wait.  You have a lot on your plate, your AN is very small and causing no symptoms.  I'm 49 and I believe my AN started 10 years ago.  I say that because I had an MRI for my other ear 12 years ago and nothing showed up.  So, I do believe it grew 1 - 2 mm each year.  I would keep very close tabs on it.  You have time on your side right now, (and a 1 year old!)

I'm reluctant to say "I would do this or that", because it would be awful if symptoms showed up for you in 3-4 months as a W&W, that's why it always has to be YOUR decision.  But, since you asked specifically, that is what I would do if it were me.  But hugs, and you are still a young pup.  I bet you probably don't even have a furrow between your brows yet, do you?  LOL!

Tisha

[goinbatty]

I chose treatment not necessarily because of symptoms but because it grew more rapidly than the norm.  I noticed more balance issues but nothing compared to what I've read on here.  Also mild hearing loss and tinnitus.  With my job, I've worked with many patients/families that have to suddenly deal with differing levels of disability.  I wanted to attack this thing before it got to that point.  Of course, with any type of treatment there are risks.  So far, so good. 
Sandra

[jlamborn]

Besides my hearing loss (mine went during the period of less than a year), my balance and dizziness issues got rapidly worse.  I was just about to the point where I could not drive and keep working.  I also wanted the thing completely out and not have to worry about needing to take it out anyway possibly down the road if I chose radiation.  I chose translab because the hearing was already shot and it gave the best chance of preserving the facial nerve injury during the surgery.  I had a little facial weakness right after the surgery (woke up perfect, but probably due to swelling, the next morning that side was weak).  Most of the symptoms went away after 6 months and am now doing fine.  I have a hearing aid on my remaining ear (due to some inner ear damage during a car wreck about 3 years ago) and a couple of months ago went through the BAHA surgery implant on my AN side; I get my processor January 9th and can't wait!  Of course still the tinnitus; basically you just get used to your new "norm" and go on.  I still have my good days and a few bad days where I feel like a pity party, but I think we all do that.  As time goes on, you have more good days than bad. 

[Rivergirl]

Glad you asked the question jlamborn! It is interesting to me as well.  I have significant vestibular nerve damage and loosing my hearing.  Everyday I fight the off balance, tinitus, constant pressure and fullness and sometimes darn right moments of pretty good pain where i have to hold my head for a few seconds.  My MRI in October showed minimal growth so I go back in the spring, I may choose the surgery as the location is not great for radiation.  So I hope you get lots of responses with good information so I can benfit too.  I think if I was 37 (50ish) and had a small one, I might chose treatment before you get to this point, I would have liked to preserve my balance nerve if I had known.  Good luck with your decisions, they are tough.

[mk]

Nancy Drew's story is interesting - Small AN, few symptoms. She did an exhaustive research, so it would be very informative to read her posts.
Nancy are you out there?

Marianna

[Keeping Up]

I might chose treatment before you get to this point, I would have liked to preserve my balance nerve if I had known. 

The balance issue is a really good point - I might have to delve into that one later.  I am not so worried about hearing loss (probably should be - read the post on the adventures of SSD, I can picture the descriptions), moderately terrified of any facial weakness - but hadn't thought about balance.  Especially as we age, we will lose balance regardless - don't want to be an active 70 year old with crappy balance (don't drink enough milk so my bones won't handle tumbles in my 80s!!!!)

I will have to raise that one with the team at some point.

[Tamara]

I've just been a lurker lately but thought I'd chime in.  My 7 mm x 7mm AN was surgically removed by translab surgery this past summer.  I had a number of complications (CSF leak, facial palsy) but would do it again.  My reasoning?  It wasn't going to get any smaller and I wasn't going to get any younger (45).  If I was your age, with your kids, I might have considered W&W for a while.  As it turned out, I had an ultra-rare lipoma tumor which was very "sticky" and difficult to remove, hence the facial nerve involvement.  For me, I was glad to have it removed while it was a little sticky mess instead of waiting for it to be a big sticky mess.  Of course, hindsight is 20/20!

Best wishes,
Tammy (BTW, palsy almost resolved, can wear eye makeup again, but still can't whistle)

[macintosh]

The following link is an interesting response to your query. It describes a series of case studies, the first of which is very similar to yours (even down to being 37 years old).

http://www.acousticneuroma.neurosurgery.pitt.edu/docsurvey.html

As the researchers noted, when neurosurgeons are asked what they would do if they were the patients, a lot of them seem to choose watch and wait.

In my case, I had radiosurgery for a small one (7mm), and came out well. At about six months I was complaining of mental fatigue, but now, two years out, I feel fine and the AN showed shrinkage on the last MRI. I decided to get it zapped because I was pretty sure my hearing was deteriorating (and my wife thought so too), and because I figured it was going to happen eventually anyway.

As you have wisely said, you have plenty of time to make a decision. If you decide to wait, I would suggest that you get a yearly MRI just to be safe.

Mac

[Dawn]

Thought I'd add my 2 cents.

I was diagnosed 2 weeks ago.  I also have a small tumor 4mm but have some balance issues, nausea, no hearing loss but some high pitched ringing in my ears from time to time.  The reason I went to doctor was due to these bouts of severe pain in my head that last a few secods with any type of pressure such as laughing too hard or cheering loudly at sporting events...things like that.  These episodes made my head feel like it was going to explode!  Well a month ago while cheering on my favorite NY Rangers Hockey team I had one of these severe episodes that lasted about 15 mins and since that time I have had nausea, dizziness and loss of balance when turning quickly.

so I went to my Dr and MRI found the AN.  I have since started some balance training exercises and am going for an ENG tomorrow.  I'm scheduled for a follow up MRI in march to see how fast its growing.

So I'm a W and W for now at least until March.  If the nausea and dizziness doesn't get better I may decide for surgery but for now I also have some time to think and continue research and reading on this website.

I'd also like to thank everyone who responds on this website who have been thru it, you have no idea how much it helps us newbies!!!!!

Happy Holidays to all   

[sgerrard]

I'd also like to thank everyone who responds on this website who have been thru it, you have no idea how much it helps us newbies!!!

Actually we do. Every single one of us was once a newbie just like you, receiving great help and support from the old hands on this forum. We're just passing it along.

Steve

[fbarbera]

Personally, I would probably monitor it to at least see if it is growing and then, if growth is detected, I would go ahead and zap it with Cyberknife without waiting for further symptoms to develop.  The surgeons will try to scare you by saying at 37, you are at risk for getting cancer thirty years from now.  Don't believe it.  Make sure to consult with doctors who specialize in BOTH surgery and radiation -- they are the ones most likely to give you unbiased information.  At 37, you want your hearing and facial nerve intact, among other things, and CK is the best way to kill the tumor while retaining those functions.  I was 35 when I was treated.   I might contact a CK doctor now.  It might make your watching and waiting easier to know how painless CK is.  Feel free to contact me directly if you want to discuss further. Good luck, Francesco               

[staypoz]

As everyone else has said, a lot of factors can influence your decision.  In my case, I decided to have surgery because my balance was deteriorating, I was still relatively young and figured I would recover faster than if I waited until I was older, and I stood to lose most of my accumulated sick leave because my employer was reducing the amount that you could carry.    I might have made a different decision if any one of those factors had not been at play.  I think the important thing is to be at peace with whatever decision you make, because you make the best decision you can at the time with the information you have available.

staypoz

[kellilovesjohnny]

I had what a couple of surgeons considered a small tumor 11mm. I decided on surgery due to my age 39 and I did not want to try Gamma knife and then 10 years later find that it (Tumor) continued to grow again and then future surgery and then I would be 50. I had my surgery Oct7 and ran into very rare complications. It has been 2 months and I feel very well. The things that were bothering me like nausea and eye jumping issues are gone. Even after all I have been through I am glad that it is a bridge that has been crossed and hope not to look back anytime soon. The key to all that I went through was GOD, Positive Thinking, Great Support (My Wife) and time off to recover. It is a tough decision and groups like this and local support for AN is invaluable. Make sure your Dr's are experienced with this type of surgeries and prepare as much as possible. I went to the hospital a couple of times just to get ustu being there and face the unknown fear.

I found that speaking to other people that went though either surgery or laser healing helped immensely. Please keep posting and keep your spirits up. GOD Bless....