Can we talk about tiny ANs here?

[Nancy Drew]

As you can see from my signature, I have a small AN.  It grew slightly this past year, but I also got some decreased hearing along with the growth.  I see here on this websit a lot of comments about "oh, it's small, just watch and wait" or "the MRIs can have slight errors depending on how it is taken or who reads it".  Sometimes I feel like us small ANers get left out.  Personally I have a lot of anxiety, and I don't know what I should do.  Do I continue to watch and wait, let the thing grow, lose some more hearing, because, afterall, "it's small".  Maybe I'm feely grumpy.  I don't know where I belong since my AN isn't huge.  Anybody else frustrated or is it just me? 

Nancy

[leapyrtwins]

Nancy -

you might not be looking for an answer from me, because my AN wasn't tiny - it was middle sized.

However, I thought I'd give you my two cents worth anyway.  Hope you don't mind.

If I had a tiny AN like yours, I personally would look into radiation.  I'm not the kind of person who could comfortably watch and wait - although lots of people do; I would just have too much anxiety while I was watching and waiting.  I also don't think I'd have surgery for something tiny.

That said, this is just my personal opinion - and as you know, treatment choice is a personal choice.

I'm sorry you feel left out; that wasn't my intention - or anyone else's I'm sure.

I apologize for hijacking your thread,

Jan

[Jim Scott]

Nancy:

It's O.K. to be grumpy (I'm quite good at it).  You have something (an Acoustic Neuroma) that could turn out to be a life-altering medical problem and you're unhappy about the situation you find yourself in.  That's understandable.  Unfortunately, you seem to believe that 'tiny' AN's are given short shrift on these forums.  I have to challenge that contention.  You've posted many messages regarding your AN situation and received many caring replies.  I know you're very concerned about losing more hearing in the affected ear, which is a valid concern, but that is part of the frustration of Acoustic Neuromas.  No matter the treatment, outcomes cannot be guaranteed.  That stinks but it remains a reality.  As you've previously rejected the idea of microsurgery, observation ('Watch-and-Wait') or radiation are the only viable responses left.  The fact remains that no one can make that decision for you.  I realize you're undoubtedly stressed by having to deal with this and want to get past the decision-making process, but there it is, anyway.  You have to do it.... with no guarantee of preserving hearing in the affected ear.  Yep, it's definitely a lousy situation but one all AN patients have to face at some point.  It's a miracle we're not all far more than just 'grumpy'.

Granted, folks with large AN's may occasionally receive more responses because they have bigger challenges to deal with.  That doesn't minimize the level of concern, compassion and support all AN patients are offered on these forums.  You have a small AN that is eminently treatable or can be observed over time then treated when it becomes clear that treatment is indicated.  I don't know what else anyone can offer you at this time.  We certainly relate to your dilemma and want to help you as best we can, even if only to commiserate with your anxiety and offer a place to vent.  Consider that done.  I'm hoping you'll find some solace in that and feel less grumpy soon. 

Jim   

[marg]

Nancy,
   As you can see from my signature... my A N  was very small.  I did have some hearing loss - that's how the AN was found -when I went in to have a hearing test with my ENT.   I chose surgery because I wanted the chance to keep my hearing (a middle fossa approach often saves hearing ).... I unfortunately did not keep my hearing.  Any approach you take has stress , risk and the possibility of complications.  There is no way to avoid this stress and no way for anyone else to make the decision of  what treatment to havefor you.  I agonized about what to do for almost 3 months and then waited 3 more months for my surgery date.  A very tough time for me, my family and friends.  Grumpy at times is just part of the unwanted AN package.  Those of us with a small AN  belong on this site as much as anyone else - It sounds like you are more anxious because you haven't come to a decision you have a peace about - when you do , it will help lessen the stress a bit. 

I hope you come to a decision soon about what to do .... indecision is something that can take the joy out of your life in the present- and we all need to enjoy every day we are given.

marg

[Omaschwannoma]

Nancy,

You are "Watching and Waiting" at this moment because it is NEVER good to make a choice under pressure, especially one as difficult and important as this one.  You are watching for more or worsening symptoms and waiting for those symptoms to indicate to you only when you should make your choice.  I was put on the very same, but as soon as symptoms to my facial nerve became more involved than they already were I made up my mind immediately!  I chose surgery and wouldn't change it as I was told my symptoms of poor balance, hearing and facial nerve involvement at time of diagnosis wouldn't change much after FSR treatment.  But this is not to say GK or CK would have offered me a better outcome, I did not look into those types.  My hearing was poor at time of diagnosis, but surgeon felt he could save what was left--I am SSD.  I have often said "Size doesn't matter." and this rings true as peoples symptoms vary greatly and don't seem to adhere to large or small but rather where the AN is located.  It was stated at the last Symposium small tumor removal has better facial nerve outcome, this is for surgery, cannot comment on GK, CK or FSR forms of treatment.  So, to wait until tumor reaches medium size makes it more difficult for the patient's facial nerve to come out unscathed.  My tumor was medium, I had facial nerve involvement and there is slight synkenesis, but you wouldn't know this unless you knew me before or are in the medical profession of dealing with facial nerves.  I hope this helps you.  Please know we are here even for those with small ones as you do have a better leg up in higher percentage of better outcomes after treatment.  I'm sure there are other people out there that feel the same as you, but didn't have the "nerve" to write about it.  No pun intended!

[Nancy Drew]

I didn't mean to sound ungrateful because for the most part I have found wonderful support from those who have posted on this forum--especially those of you who pretty much respond to all of my posts.  However, it is scary to read posts from people who have had bad experiences and sometimes failures from their treatments.  Maybe I feel guilty because mine is so small, and yes, I probably will have success if it is treated while it is small., And I will most likely have a successful outcome.  However, I don't seem to run across as many stories from those who have the small ANs, and when I see the stories from people with the bigger ANs I'm not so sure how to relate that to my own situation so I sort of feel left out since I am in a bit of a different category.  Yesterday was a bad day, and I am on more of a positive note today.  A friend whom I care about very much made a statement that threw me over the edge before I wrote this post yesterday.  She is not informed about what ANs are, and I should have taken that into consideration before posting here and maybe taking it out on all of you.  She said, "Nancy, it could be worse.  It is small and not benign and you are not going to die."  She has also seen the CK commercials on TV that make treatment look like a miracle cure.  Like you walk in, have it zapped, and then your are on your way.  I know it could be worse because so many of you have been through heck, and you are hanging in there nevertheless with such a good outlook on life.  I don't have your experience for the most part only because I have been watching and waiting with the hope that I would never have to make a decision.  My AN was found by accident.  Now that things are getting a little more bothersome, I just find myself to be a mess, depressed and all of that (Biplar disorder on top sometimes gets in the way also).  The panel of doctors discussing my case meet tomorrow, and I hope I hear from them tomorrow.  The person I talked to in the doctor's office said it could be tomorrow or sometime next week.  I feel crazy right now just from the waiting.  I read one of Steve's posts from a long time back about these boards sometimes attracting people who share their negative outscmes, and I have read some of those and felt depressed and scarred out of my mind after reading them.  Those of you who post often like Jan, Jim, Phyl, and so many others whose names I can't remember are alway so nice and supportive.  It's the negative stories and those who seem to downplay us "little ANs" that make it so confusing.  I know many have been where I am today, and I appreciate your support.  If I didn't find this forum helpful, I wouldn't still be posting.  I'm not out for a pitty party or anything like that.  I am just trying to deal.  Thanks everyone for your support.  Nancy

[wendysig]

Nancy,
You don't sound ungrateful, just scared and confused like many people here.  With a small AN,there are more choices with regard to treatment, but that doesn't take away from  how you feel about having an AN.  Whether their AN is big or small, everyone here wishes this never happened to them..  Whether big or small it is perfectly normal to feel anxious just because you have an AN.  If you have reached the point where you feel you need to have your AN treated, my suggestion to you is to schedule appointments with a couple of radiation oncologists at least one who does CK and one who does GK.  I also would not rule out scheduling appointments with sugeons.  They can certainly tell you whether they would be willing to operate on you for an AN the size of yours.  My AN is bigger than yours 1.3 cm (it might be slightly bigger now since my doctor thinks it might have grown.  I'm going for a follow up MRI next week).  I too had a choice of treatment because my AN is considered small.  I have opted for surgery for many reasons, but first and foremost, because I feel in my gut that this is the right choice for me.  I most likely suffered from the same amount (or at least a similar amount)  anxiety as you before I made a treatment choice.  Once my choice was made, I felt like someone had lifted a huge weight off my shoulders.  I didn't feel anxious during almost every waking hour anymore.  I am comfortable with my decision.  I trust my neurotologist.  He is a fantasic person and wonderful doctor,  and I trust him  more than I have ever trusted anyone.  I feel like I will be in good hands on the day I have my surgery and am as confident as I can be that I will have a good outcome.  You  have to make the choice that will give you this feeling, and the only way to achieve this is to make an informed decision.  It would also be a good idea to go to the CK support group (cksociety.org) and try to get some feedback ther,from Drs. Medbery and Spunberg.  They are leading phycians (radiation oncologists) who use CK and are both kind and compassionate doctors. Even though I didn't choose CK, I felt they helped me,and I think they can help you.   I hope this helps.

Wendy

[er]

Hi Nancy,

If I was in your shoes I would be grumpy also. Small or big it is still a tumor and you are going to worry. It is a fact that it is there. So you know there are things  going on in you body and it is not your imagination. I am so sorry to hear you do have an AN.
I am not very good with words but there are so many here that are very gifted to be able to help. But I do sympathize.
eve

[Debbi]

Hi Nancy-

Yep, there's nothing like an AN (of ANY size) to make a person grumpy!  We've all been there - and here's a little secret - just because you get it treated doesn't mean you still won't get grumpy now and again.     You're entitled.

You probably read more of the scary stories here because the people who've experienced complications (and I suppose I am one of them) have more to say.  However, I don't think any of us means to minimize anyone else's AN just because it may be "small" - sorry it's still a tumor, no mater what size it is!!  And it is darned scary.  Give yourself time to sort everything out, talk to more than one doctor, weigh out your options.  Wendy said it quite well when she told you that she "knew" when she had the right treatment choice for herself - you will, too, Nancy.  Meanwhile, we're here for you!

Debbi

[mema]

Hi Nancy,


I am a small AN'er myself.  At the time of my consultatons, I thought that all the Doctors seemed sure that treating a small AN was better.  That on top of my medical insurance was soon to change I chose FSR.  Unfortunately I've had some issues with vertigo and spasms. I'm on  neurotin which seems to help.  Your An is very small so you have time to wait and watch.  We all know the anxiety you must be feeling.  We've all been there.  There are so many options out there.  Get alot of consultations.  Teaching hospitals are always good because they are up on all the new information and procedures.  Again, time is on your side.


mema

[Nancy Drew]

Thanks mema,

Nice to hear from someone with a small AN. I hope you didn't rush with your decision because of insurance issues.  I am sure a lot of people have had to make that decision.  Hopefully you are doiing well.  Do you have any problems with your hearing?  I am awaiting a recommendation from a panel of good AN doctors here in Dever.  My doctor says gamma knife is the way to go.  We do have a teaching university hospital here, and I  might go there.  I think there is a guy on this forum who explored, and he didn't feel comfortable with the doctor--recommends surgery only.  He ended up going with GK, and he had his MRIs read by the same docs who are studying mine.  They do surgery and GK.  His AN was small, and he had good results.  I still need to check out CK.  It is good to check out all of the bases, and it is good that we have choices since the ANs are slow growing.  I wouldn't mind watching and waiting longer, but I want to preserve the hearing I have now.  I know there are chances I could get worse hearing or lose it all if I do any of the treatments.  It is a decision that I will have to ponder, and most of the people on this site say go with your gut.  My gut for now is telling me to do something.  I am scared to death of surgery so I will probably go with GK or CK.  Thanks for your input.  Best wishes.

Nancy

[thornapple]

Hey, I will talk about tiny ones. Mine is apparently very tiny, but since is on the cochlear nerve so they are going to do NOTHING. On some days, I realize how fortunate I am to not have to have surgery or the problems that can come from surgery.

Other days, I am more than grumpy. I am PISSED AS HECK. I have balance problems, raging pulsatile tinnitus, going deaf in that ear, my neck hurts all the time, I get so tired at times it is like I am drunk, and there is absolutely nothing anybody can do about it.

Except me, which is to think about something else. So rather than make myself crazy...I keep myself busy.

I don't know if that is any help to you...but I know what you mean about tiny vs. humongous. Tiny still sucks. Life changing event. On to the next thing....

[leapyrtwins]

Thornapple -

I knew you had an AN, but I didn't realize until now that no one plans to treat it.  Are you saying that because it is on the cochlear nerve, there is nothing that can ever be done for you?  What happens if tiny turns into small or medium?

Forgive me if I'm appearing to be nosy, but I've never heard of this situation before. 

Jan

[thornapple]

Apparently when there is an AN on the cochlear nerve, if it grows, it fills up the bony cavity and mashes fllat/destroys the cochlea and labyrinth and then stops growing. They can't kill it with radiation, because they will also destroy the cochlea in the process. If they do surgery to take it out, they would destroy my hearing and balance on that side instantly. If they leave it alone, I can preserve what hearing and balance I have on that side for as long as it takes to destroy things, perhaps decades>>>>and I will physically adjust to the situation gradually, instead of instantly as the case would be by surgery.

It hurts. My neck hurts. The inner ear is inflamed. I have a banshee beep jet airplane niagra falls concerto going on in my ear. I thank my lucky stars I don't have vertigo. I can still hear, sort of. Even through all that racket.

I can see how I am fortunate in many ways, but this is not a normal situation and I am having to adjust my attitude on a daily basis. I get very tired. A physician's assistant told me, "oh, you are probably used to it" and I got INCREDIBLY annoyed. I am used to it like you would get used to an elephant standing on one of your feet. If you had to spend the rest of your life that way, you would figure out how to get on with life; but are you "used" to it?

[Jim Scott]

Thornapple:

If anyone has a reason to be grouchy/grumpy/crabby/cranky or just in a bad mood sometimes, you certainly do.  Pain and gargantuan-sized tinnitus has to be exasperating and difficult to handle.  That you do, daily, is a testament to your spirit and grit.

Your situation is obviously doubly exasperating because you suffer the effects of the tumor and cannot obtain the relief of treatment. 

The P.A.'s tactless comment was as ignorant as it was insensitive.  Coping with severe discomfort and being oblivious to it are two vastly different things.  How these kinds of people get into the medical profession and survive, seemingly without a modicum of sensitivity for suffering patients, is a mystery.  However, thoughtless dolts like that can't keep us down, can they?  But they sure can irritate us for awhile.

I'm very sorry for your pain and discomfort and I pray that it will lessen somewhat in time.

Jim