2 yr wait and watch what next

[DHJ]

Do not know how much longer I can wait. Am going to MGH for 4th mri and am hoping my AN is still 2cm.We have had no measurable growth since it was discovered 2 yrs ago. Doctor McKenna at MGH is wonderful and will let me decide on treatment options.Currently experiencing Left sided hearing loss (not useful hearing) tinnitius,and minor balance issues. Why can I not make up my mind?? Any Ideas?

[CHD63]

Hi Dave .....

As you have already noted, the decision-making process in this AN journey is one of the toughest parts to the whole thing.  Are your symptoms staying basically the same?  If so, and the upcoming MRI is still showing no change, it is probably safe to wait and watch until you have a change in symptoms or MRI.  As you have no doubt been doing already, doing your research and talking with all of the medical people/friends you trust is important, as well.  Then you need to listen to your inner self ..... are you comfortable waiting and watching or do you really want that AN out of there?  When you have done your homework,  answered those questions, and listened to your gut feeling, you will know what is right for you.  It really is your decision alone to make.  Dr. McKenna is highly respected so you are in good hands.

Let us know how this next MRI turns out.

Thoughts and prayers.  Clarice

[Kate B]

Do not know how much longer I can wait. Am going to MGH for 4th mri and am hoping my AN is still 2cm.We have had no measurable growth since it was discovered 2 yrs ago. Doctor McKenna at MGH is wonderful and will let me decide on treatment options.Currently experiencing Left sided hearing loss (not useful hearing) tinnitius,and minor balance issues. Why can I not make up my mind?? Any Ideas?

Gosh, it is understandable that it gets confusing.  The fact that we have options is a good but overwhelming double- edged-sword.

It may be as the symptoms progress you determine when it will be the right time. Typically what you have going into treatment is often what you have coming out.

I did put together a decision making chart... http://anausa.org/forum/index.php?topic=9601.0

Kindest regards,
Kate

[sgerrard]

If watch and wait is making you antsy, you probably aren't going to wait forever, in which case you might as well get on with it. There is nothing wrong with deciding that perpetual waiting is not for you, and that you want to do something about your AN now. As for which treatment to get, that is a whole 'nother kettle of fish.

Steve

[suboo73]

Do not know how much longer I can wait. Am going to MGH for 4th mri and am hoping my AN is still 2cm.We have had no measurable growth since it was discovered 2 yrs ago. Doctor McKenna at MGH is wonderful and will let me decide on treatment options.Currently experiencing Left sided hearing loss (not useful hearing) tinnitius,and minor balance issues. Why can I not make up my mind?? Any Ideas?

Hi Dave, 

I have been diagnosed under one year, so need to schedule my next (3rd) MRI in Oct. or so - in fact, have not done so yet. 
Am i getting lazy with my appointment making or just trying to avoid the whole thing?  I find the entire situation puts me in such a quandary! 
The first surgeon i visited said i should do something "right away" either surgery or radiation.  The radiation surgeon said i had plenty of time to decide, no rush. (same facility.)  The ENT said, if the AN gets to 1.5cm, i should 'do something.'  OH MY!

My biggest concerns if i wait are:  additional hearing loss, balance issues (nothing significant now), increased tinnitus, and any changes in our healthcare system making treatment options more difficult.  In other words, i guess i am 3/4 the way to treatment and am anxious to see the next MRI as well - just never put it in writing until now.  [And the anxiety prior to the appointment really gets me going, too!]  -- On the flip side, will treatment make any symptoms appear/get worse?  uurrrgggggghhhhhhh!

My spouse will not weigh in on the decision either - we have always decided our own medical issues, not always an easy task - and i definitely don't like this one.
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My thoughts and prayers as you continue this journey.
I know by all others accounts, you have a great doctor - so hang in there, get the next MRI and i think you will know what to do then.

All my best from a fellow W & Waiter,
Sue

[Cheryl R]

Sue, even the drs have varying opinions on if you should go ahead when it is small or wait till you think you are ready for treatment.    You may  lose some hearing but to some that is not even the best thing to use as you decide what is right for you. 
  Such a hard choice and then not feel guilty that maybe you should have done it another way.              There are no gaurantees with any of this to know what the best way is for your own tumor.                   Hang in there!
                                                          Cheryl R

[Kate B]

Do not know how much longer I can wait. Am going to MGH for 4th mri and am hoping my AN is still 2cm.We have had no measurable growth since it was discovered 2 yrs ago. Why can I not make up my mind?? Any Ideas?

Hi Dave,  
 
My biggest concerns if i wait are:  additional hearing loss, balance issues (nothing significant now), increased tinnitus, and any changes in our healthcare system making treatment options more difficult. [And the anxiety prior to the appointment really gets me going, too!]  -- On the flip side, will treatment make any symptoms appear/get worse?  uurrrgggggghhhhhhh!

Sue

Sue and Dave,
The general consensus when I was doing my research is that most of the time the better your hearing  at the time of treatment, the better chance for hearing preservation on the flip-side.    I know people on this site who even though the tumor has never grown, the symptoms such as hearing loss and tinnitus have increased.

Steve used the term "antsy" a few posts ago. That is a great way to think about it.

You also raise a viable question about changes in our health care system...I guess it is a matter of changes in group or individual  insurance as well.  Having been down that lane with my son, it is a road laced with pot holes at times.

At one point, I thought I might be a wait and watch.  But at the age I was when diagnosed (45) I decided that having it discovered at 1.5 cm was ultimately a gift that should be acted on sooner then later as it gave me the option of choice.
Along with that came the confusion of which treatment path to take. The benefit of  my treating it sooner than later was the ability to attempt to preserve what I had.

Ultimately it will crystallize (treatment or continue to wait and watch) and  both you and Dave will feel a heavy burden lift.  

Kindest Regards,
Kate

[Jim Scott]

Do not know how much longer I can wait.  Am going to MGH for 4th MRI and I'm hoping my AN is still 2cm.  We've had no measurable growth since it was discovered 2 yrs ago.  Doctor McKenna at MGH is wonderful and will let me decide on treatment options.  Currently experiencing left sided hearing loss (not useful hearing) tinnitus and minor balance issues.  Why can I not make up my mind??  Any Ideas?

Sure.  Because you realize that the final decision is totally your responsibility and you fear that the 'wrong' decision could end up being life-altering, you're naturally hesitant to commit to a specific surgical approach, which postpones having surgery and thus spares you the risk you're hoping to avoid - a less-than-good surgical outcome.  This is pretty routine for a lot of AN patients, so don't beat yourself up over it - because your concerns are absolutely valid.    Of course, you also realize that you need to address the AN and can't procrastinate indefinitely. This presents you with a dichotomy that can be maddening, if you let it.  In the final analysis, you'll have to take the risk of a possible less-than-perfect surgical outcome.   We all do.  To our great consternation, there simply is no guarantee of a complication-free surgery.  We research doctors, facilities, national statistics, etc but even with all the information, surgery (or radiation, for that matter) is still somewhat of a risk.  Oh that it were totally predictable!   At some point, you'll have to chose to take the necessary risk and pick a surgical approach and then go with that and don't look back or lose yourself in 'what-if's?' that can drive you crazy.  Often, increasing symptoms drive an AN patient to finally choosing a surgical approach and just going for it.  Although I wish you a 'clean' MRI (no AN growth), if it isn't, that may be the catalyst that finally helps you decide on a treatment.  Whatever happens and whatever you do, the folks on this board - including me - will support you all the way and come Surgery Day - whenever that occurs - we'll be rooting for you. 

Jim

[suboo73]

Cheryl & Kate & Jim,

Thank you for your kind words.  There is much wisdom here on the Forum - i know you all speak from experience and that really helps alot!
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Dave - keep us posted on your next MRI - and know that you are not alone.

My thoughts and prayers are with you.
Sincerely,

Sue

[DHJ]

Thanks for your advice,concerns and prayers.i know AN treatment is a personal choice but it is comforting to know others who have traveled this path.Today I am happy waiting and watching and who knows what tomorrow will bring. Anyway off to Dr. McKennas in 2 weeks for 6 month check up. AN has stayed at 2cm for 18 months now with no new symptons but left sided hearing is toast along with some tinnitus.   Peace Dave J