Another Newbie

[AIteach]

Hello everyone,
I've been doing a lot of reading on here over the last few hours.  I was diagnosed in February with a very small acoustic neuroma.  It is 6mm and I don't remember the other dimensions...maybe 2mm by 3mm.  We are in the "wait and watch" mode right now.  I will have another MRI this summer.  If and when it comes to treatment, The doctor recommended the middle fossa approach to preserve my hearing as I already suffer from a severe congenital hearing loss in my other ear.  He advised against radiation because of my age (46) and current hearing loss.  Can anyone tell me more about the pros and cons of radiation including Stereotactic radio-surgery?  Also has anyone had good results with the Middle Fossa approach?  I am very concerned with facial paralysis problems.  Part of me would like to avoid some of the more serious side affects like facial paralysis,  brain fluid leakage, and permanent balance issues (I suffer with vertigo now)  with a translabyrinth approach.  I know it will kill my hearing, but I already know sign language as I teach deaf children. It may sound crazy but losing my hearing is not half as scary to me as all the other things that could go wrong.  Feel free to chime in.  I'd love some level-headed, experienced feed back.  Thanks
Lauren

[Pooter]

Lauren,

Welcome to the forum!  As you probably have already seen, there are lots of great folks here not shy about sharing their experiences with all types of treatment..

I didn't have middle fossa, however from what I've seen many have had great outcomes with that approach..

I believe the thought that radiation is bad based on your relatively young age has been debunked both by members here and by credible radiation oncologists that are familiar with using radiation for the treatment of ANs.  With that said, given that you suffer from vertigo now, that gives me pause for using radiation as a treatment because it's not likely to get better (from what I've read about here), however with surgery (any of the 3 main approaches) it's very likely to get better.

No matter the treatment, all of those "serious side effects" are a possibility..  So, choosing one approach over the other may infantesibly affect your chances for having that kind of side effect.  Aside from hearing preservation, that is.  As you know, with translab your hearing will be gone no question..  With retrosigmoid and middle fossa approaches, there is a theoretical chance of saving your hearing... (same with radiation, btw).  You run that risk for those "side effects" no matter the treatment choice (surgery or radiation, translab, retrosig or middle fossa, etc..).  Sure the statistical chance varies slightly with each approach, however it's not a great change between them.

At the current size, I think watch and wait is very appropriate unless the vertigo becomes unmanageable..  It's great that you already know sign language and I assume you already know how to read lips.. That will be an advantage for you, I think.

Again, welcome to the forum.. we're glad you found us!

Regards,
Brian

[AIteach]

Thanks Brian!  I appreciate your input.  I read your blog and "wow" I really admire the wonderful relationship you have with your spouse.  A question for you...how did your kids react to the situation?  That is also a concern of mine as I have an almost 9 year old daughter who is very sensitive and we've been through a lot lately.   She's used to leaning on me through all of our trials.  I'm also worried my husband will not be able to deal with it all.

Lauren

[Pooter]

Honestly, Lauren, my kids were great.  My daughter was 7 and my son 3 at the time my surgery.  They visited me while in the hospital and my young son remarked about my scar that I was in a fight..  My daughter seemed to take it in stride.  All we told them before the surgery was that I was going to the hospital for an "ear thing" and that I would be okay.  It was only afterward that we let my daughter in on a few more details than that.  After surgery, they knew that I would be sleeping alot and that they were to be careful around me for awhile because my balance wasn't so good.  They were told not to run and jump into my arms (as they've always done) etc..

Kids are very resilient...  Only you know your kids..  You know how much information will suffice their curiosity.  The main thing that they need to know is that you'll be okay and you'll be there for them for many years to come.  The details about what really is going on (surgery/radiation, tumor, etc..) is really personal and should be only given to them in a way that helps them understand that it's serious, but not life threatening.

They'll be just fine..  Especially given that you've had other trials lately, she will likely just want to make sure that you're still going to be here to lean on..  You will be.

Likewise, I'm sure you're husband is partially scared of losing you as well.  Both physically (death) and mentally and emotionally.  Let him come here.  Read the stories from those that have been there.  There are many of them here.  Have him read my blog.  Let him be assured that not only will you be here, but he'll need to buy 2 rocking chairs when you're both old.  It will be an adjustment for him to (as I'm finding out more and more), but you guys will be able to make that adjustment to the 'new normal' that you're likely to have after treatment.

If you remain in 'watch and wait' mode, then there will not be any 'changes'... it's only after a decision has been made on treatment, treatment and after treatment when the 'change' to the 'new normal' will come into play..  If you stay in watch and wait, then there's not much difference than your life now other than the fact that you know you have an AN.

Regards,
Brian

I'm glad you found the blog informative.  That's why it's there.

[knakag01]

Hi Lauren,
I just wanted to welcome you to the forum. I'm sorry I don't have much insight on surgery approaches, I am scheduled for translab in May. It does seem, from what I've read, that no matter the treatment (radiation or any of the surgeries) the possibility of facial paralysis, vertigo, etc. are present.

The treatment decision seems to be the hardest part of the journey. My advice is to do a lot of research and do what feels right for you, if the time ever comes where you need to do something beyond watch and wait. The decision on which route to go is very personal. I found that I felt very much at peace once I decided on which treatment was right for me. I wish the same peace for you and your family.

Take care,
Kim

[leapyrtwins]

Part of me would like to avoid some of the more serious side affects like facial paralysis,  brain fluid leakage, and permanent balance issues (I suffer with vertigo now)  with a translabyrinth approach. 

This is pretty much everyone's goal when it comes to surgery.  No surgical approach can guarantee you will or won't have certain side-effects.  I had retrosigmoid and I didn't have facial paralysis (beyond a day or two post op), a CSF leak, or permanent balance issues.  Some who had translab may have encountered them.  Everyone's AN Journey is somewhat unique.

Mid-fossa is the best approach for saving your hearing, if it's worth saving - but not all doctors do this approach.  Also not all ANs are amenable to mid-fossa, it depends on size and location.

It sounds like your doctor does this approach and you're a candidate, but I'm not sure I'd rule out radiation.  Your AN is considered small and your age really isn't a factor.  Does your doctor do radiation?  If not, you should consult with someone who does - since docs who treats ANs surgically tend to recommend surgery and docs who treat ANs with radiation tend to recommend it.

You want to cover all your bases and investigate all your options.  If you haven't contacted the ANA for their informational brochures, I highly recommend it.

Jan

[Tumbleweed]

Can anyone tell me more about the pros and cons of radiation including Stereotactic radio-surgery? 

Hi, Lauren:

Click on this link and then scroll partway down the page to my post. It includes much of the information you seek:
http://anausa.org/forum/index.php?topic=6670.0

Best wishes,
TW

[Cheryl R]

Hello.  Your situitation is somewhat similar to us ANers who have NF2 which is tumors on both sides.       One has to make sure your dr is really familar with this so as to decide what is the best treatment and try to keep hearing.      Also each dr may have their own idea what is best so is hard to make the best decision on what is right for you and not just what the dr says too.       I am NF2 and have had 3 tumors so far.           One does read here of many possible post op problems but a newbie also may not see that many do not have all the problems or some which just takes a little time to recover from and life is back to normal and maybe with some slight adjustments.           Facial paralysis is frequently a temporary issue.      Tumor location plays a part in how much damage there has been to the facial nerve.                  Not all drs do lots of mid fossa.            I am in Iowa and go to the Univ of Iowa to Dr Bruce Gantz who does.       I am deaf on the rt and my left sided tumor was growing to where I was near deaf.     I made the choice to wait and then did have mid fossa on the left 2 years ago and had plans to then have a cochlear implant a month later.   I had improvement in my hearing past surgery which is not real common but did happen.   I did not need the CI.  I do know there have been others that have had mid fossa with him and kept the hearing.            He is not one that is big on radiation for Nf2s.  Some drs do go for it.                I go to the AN symposiums so have talked to the drs from House Ear Institute in LA which does a large no of ANs.       They say they have a approx 75% success rate of mid fossa for ANs under 1.5 cm.                I waited with my situitation as was scared if I would be one of the 25% who didn't have success.              It makes for a hard decison on what to do and I wish you well.         My NF2 did not show up till was in my 50's so probably a genetic mutation.               
                                                           Cheryl R

[AIteach]

Thank you everyone for your replies.  I do realize that each case is very individual.  I will keep researching to be more prepared when decision making time comes.  Thank you so much for your support and openness.  It does help to know we are not alone in our struggles. 
Lauren