While I wasn't watching...my AN grew.

[suz]

 :(Hello friends. Needing some camaraderie from my AN gang. My neuroma grew this year after almost 3+ years in the W&W club. Now my doc is encouraging some type of treatment "soon"; either surgery or gamma knife. I have having increased symptoms but not actually worse than other times in the past. FInding it very hard make a decision and take action.  When I had cancer in the past and knew I needed surgery I didn't want to wait even a day to get it done. But I know that surgery has lasting consequences aside from just the tumor removal. I am so terrified of this surgery and the potential side-effects. I am so scared that I won't be able to continue to provide for my family. I am so scared of having a droopy face. I am so scared of the thought of the surgeons messing with my brain. I am feeling so guilty and sad about putting my sons through another episode of "Mom goes to the hospital". I am worried just about every aspect of this!
Plus we have just had a very stressful year for other reasons and my husband and I are just pretty fried; not in the best of emotional shape are we. That's my drama today. I know everything will fall into place and I will handle this like I have other things. But what I find particularly frustrating is the lack of predictability of outcomes, treatment plans, etc. for this AN business. Has anyone seen data that breaks down potential surgical consequences like facial nerve damage, hearing loss, etc by size of tumor ? Part of me wants to just let it grow and not have surgery because the side effects of surgery seem the same as having an even larger neuroma. Part of me is being rational and planning the best time to have surgery (summer) because it will be the best for my family. My doc thinks the summer might be too far off; we have currently compromised on a repeat MRI in March to see how things are going.
I guess it is pretty clear that I am feeling overwhelmed; angry and in denial all at once. I keep looking for the lesson in this. I like to see events as occurring for good reasons; to teach us the lessons we need to learn. I feel like telling G-d that this  one just sucks; that this time a terrible mistake has been made!  THis NOT the right problem for me to have! (ok there is the denial!)
Well, I just notice how late it is and I had better get to sleep.
Any suggestions, info, articles, comments, etc you can recommend are welcome.
Suz

[sgerrard]

Hi Suz,

I guess my first question would be, how much bigger is it? It seems unlikely to me that it has grown so much that there would be any difference between treatment in March versus June.

Since you have a couple of months before the MRI in March, you can do a little research. Will you have surgery with this doctor, or maybe look at getting another opinion from another medical center? Is radiation a possibility, or will it be surgery for sure?

Most of the reported surgical results show that risk of consequences goes up as the AN gets larger. It may seem like having it out is like having it get bigger, except when it gets bigger you still have to have it out, only its bigger. If it is going to keep on growing, it will have to come out eventually.

Hearing loss is pretty common with ANs, but there is no reason not to be optimistic that you can avoid facial nerve issues and other problems. It will be an adventure, but by this time next year it will be just a memory. You have every right to complain about it; no one needs one of these. But take heart; you will make it through in one piece.

Steve

[leapyrtwins]

Suz -

it's always very difficult to make a treatment decision and I'd imagine after watch & waiting it's even harder. 

You need to examine both surgery and radiation and the possible side-effects of each, weigh the odds, and then do what is best for you.  The ANA has some great literature that will help you in the decision-making process, and I'm sure your doctor will be another excellent source of information.

Surgery is never easy, but having had it myself, I can tell you that once it's over and done with it pretty much becomes a distance memory.  And most of us don't have "lasting consequences" - lots of initial issues clear up over time.  My only permanent consequence post op is SSD and there are ways of dealing with that.  Lots of people adapt to being SSD, others of us choose a BAHA or TransEar.

If you are totally opposed to surgery you may find that radiation is an excellent option for you.  Those who've had radiation are very happy with their choice.

As you say, everything will fall into place. 

Best,

Jan

[petgroomer]

Suz,
I hear you.  I can also empathize with your feelings. 
I have no answers for you tho.. but know that what goes down.. MUST and WILL come up!  It always does.
Chin up and take care of life....
There will be many on here who can give you pretty great advice and experiences and that is what this forum is all about.
Keep us posted!
Thinking of you AND your family..
xo

[Kaybo]

Suz~
I hope that today is a better day for you - I know sometimes I feel at wits end & then in the morning I wonder why I thought it was so bad!  I am not saying that your situation is not bad - it is and you have every right to feel that way.  Sounds like y'all have been thru a lot and this is just one more thing.  I definitely know how it is worrying about your kids and how this is all affecting them - I worried that my kids would always remember their childhood and how "Mama was always sick" - but many friends reminded me that they would probably remember more all that I did for them, even though I didn't feel very good or went to a soccer game straight from eye surgery with a bag of peas!  My sweet hubby reminded me that, just as we get mad at our Earthly fathers, it is OK to get mad at God and ask why, as long as you don't let it dictate your life.  I know that sometimes it is hard to see the reason, but I firmly believe that if you look hard enough, LONG enough, you will find it eventually!  FWW, I DO have facial permanent paralysis (which I don't think happens NEAR as often anymore), which I have had since I was 25, and I certainly wouldn't wish that on anyone, but it is not the end of the world - not when you think about the OTHER consequence!!  Hang tough, girl, send me your info in a PM if you would like to talk!

K   

[Jim Scott]

Suz ~

I'm sorry to learn that your AN has grown to the point where it must be addressed and that this, naturally, is generating angst and uncertainty.  Frankly, most folks diagnosed with an acoustic neuroma want firm statistics and a very precise prediction of the outcome of surgery or radiation.  Unfortunately, this is simply not possible.  The usual response to requests such as this are that everyone is different, doctors and tumors are unique and there is no template for specific procedure outcomes.  Internet research will turn up some statistics on hearing loss, facial paralysis and so on but of course, that is general information, culled from years of surgeries or radiation performed on a wide variety of AN patients by different doctors, often in different facilities.  

Your anger and disappointment is certainly understandable.  Many of us have been where you are, now.  We all survived it.  I 've never questioned God's plan for my life, I just cope with what comes.  Most of it has been good but certainly not everything.  My AN diagnosis was a shock because I hadn't experienced any health problems in most of my years - and I was 63 at the time of my diagnosis.  I was already SSD and knew that was not going to change.  I had adapted to it quite well by the time of my diagnosis.  I was quite concerned about facial paralysis and it's attendant problems.  I believe that God led me to a highly skilled, compassionate neurosurgeon that listened to my concerns, respected them and subsequently performed a debulking surgery that left me with almost no complications.  A few months later, he worked with a radiation oncologist and oversaw my 26 FSR treatments that effectively destroyed the remaining tumor's DNA.  My surgery recovery was rapid and the radiation was uneventful.  Three + years later, my life is completely back to normal and I'm fine.  This is not unheard of.  Today, we have members posting wonderful accounts of very successful surgeries and/or radiation treatments.  I hope they're an encouragement to you.      

Unfortunately, there are no guarantees with acoustic neuromas.  Well, there is one: you'll always have the support of the folks on this forum.  That should certainly encourage you.  

Jim

 

[DHJ]

Hi Suz     I know how difficult the DECISION to seek treatment can be. My last MRI showed growth and my AN is up to 2.2CM after 2 years of WW.The Docs at Mass Eye and Ear think that it is time for IT to go but I too am not ready. i talked them into waiting for another MRI scheduled in March but barring a miracle I will seek treatment.
I am trying to choose between surgery or proton beam at MGH and have read all the stats but there is no clear winner here and that is what makes it tough. Treatment is a personal choice that we must make on our own. Find a Doc who has lots of experiance with ANs ,say our prayers,and do the best we can.
            The patient survey available on the ANA website anausa.org/members is a good source of statisticle data submitted by ANA members.I have studied the data but have not found my answer yet. Maybe it wil help you.Treatment has come a long way and we will be OK.
                                 Peace David Jennings

[LisaP]

Hi Suz,

I am sorry that your AN has grown, I have been W&W for almost 2 years now,  God bless you on what you decide to do, it is overwhelming.  Go on the forum as much as you need to.  We are all hear for you.  Good luck to you and your husband.

LisaP

[Vivian B.]

Hi Suz,

Sorry to hear that your AN has grown. I have been on W & W for almost one year and have experienced all of the samy feelings that your describing. It is overwhelming no doubt, but it is treatable which is what we need to focus on despite of how uncertain side effects are from any form of treatment for these types of tumors. Hold on to your patience. I am sure you will find it.

Vivian

[davjack]

We all know how you feel. It is very frightening and everyone's case is so different. No matter what you choose, there's no way of knowing what will be, and that's the worst part. There's little to gauge outcomes on. The only advice I can give is that if you decide to get the surgery, make sure you find a really good doctor. I think that makes all the difference. I've decided on CK or GK (whatever they do at Shands) if mine grows. I'm not brave enough to do the surgery. You've already survived cancer, which to me is the bravest thing of all. Whatever decision you make it will be right. Just pray for a good doctor.
DJ

[suboo73]

Hi Suz,

I guess my first question would be, how much bigger is it? It seems unlikely to me that it has grown so much that there would be any difference between treatment in March versus June.

Since you have a couple of months before the MRI in March, you can do a little research. Will you have surgery with this doctor, or maybe look at getting another opinion from another medical center? Is radiation a possibility, or will it be surgery for sure?

Steve

Hi Suz, 

Please see the PM i sent you.
I also am curious and would ask the same question as Steve - how much bigger?

My thoughts and prayers are with you as you go thru this decision time.

Sincerely,
Sue

[yosemite71]

Hi Suz, I, too, am in the watch & wait club.  I am in denial too.  I really feel for you.  Last week I had my 6 month MRI and hearing test.  My hearing is still great. It will probably be another week or 2 until I get the results of the MRI.  The surgery scares me too.  I will have the cyber knife treatment if and when I need it.  My tumor is 1.2 cm, I pray that it has not grown. 
I empathize with all that you're going through, I have some severe family problems gong on now(my son).   Quite stressful now!  Hardly got any sleep last night and I have to go to work soon.   
Thinking of you,   have you considered cyber-knife?     Ann

[suboo73]

Hi Suz, I, too, am in the watch & wait club.  I am in denial too.  I really feel for you.  Last week I had my 6 month MRI and hearing test.  My hearing is still great. It will probably be another week or 2 until I get the results of the MRI.  The surgery scares me too.  I will have the cyber knife treatment if and when I need it.  My tumor is 1.2 cm, I pray that it has not grown. 
I empathize with all that you're going through, I have some severe family problems gong on now(my son).   Quite stressful now!  Hardly got any sleep last night and I have to go to work soon.   
Thinking of you,   have you considered cyber-knife?     Ann

Welcome Ann!  Sorry you had to join this crazy club    too.
Just know that we are here cheering you on, no matter what you choose for treatment.
And "Watchful Waiting" as my sister-in-law (nurse) says, IS a form of treatment so-to-speak.
I don't know when you first found out, and yes, the MRI's are stressful to no end! 
I go to UVA in Virginia so i can have immediate feedback - take the MRI, see the ENT, get the results right away, i want to know, none of this waiting around.  I did that for over 12 years, no more!  I have been diagnosed for over a year, and so no more waiting.

Suz - sorry for the 'hijack'  - there are many here with you in the W & W club.

All my best and prayers all around to both of you.
Sincerely,
Sue

[suz]

I want to thank each of you who gave me such honest and helpful comments and insights. I am so sorry I haven't responded sooner but please know that the posts that I have read (and the PM, Sue) have really lifted my spirits. I am feeling fairly peaceful for the past few days; maybe it's because I have so many people sending me good vibes. I am really just so grateful and wish I had the time to send each one of you a personal response. As things tend to go for me in life, I have three "biggies" happenning at once - this new AN growth; returned to school for advanced degree; and am in the middle of a complete kitchen renovation. Two out of three of those are truly GOOD things, but all kind of overwhelming when added to the already crazy schedule of full-time job, two kids, ya' know.
I have been taking some steps which were hard to take - like telling my boss that I might be out of work for two months sometime soon; scheduling an appointment with the neurosurgeon who does the SRS here at Jefferson (Dr. Andrews)to check out that option; and trying to choose the damn color for the countertops! Anyway, just taking action and planning helps. I feel both more ready to go through with surgery in the summer and also still open to the remote possibility of continuing to watch and wait. I wonder if anyone else starts to look at all of the upcoming events in their lives and thinking about  when treatment would really get in the way of important things - like my sons Bar MMitzvah for instance.  I know that health comes first, but as a mom I can't help but think about how it has an impact on three other people close to me.
To answer the question that many of you asked about how much my AN grew - I don't have the numbers in front of me - but the MRI report usually describes three dimensions - one dimension did not change at all, one went from 1.5 to 1.9, and the other grew about .5 cms also. My symptoms are not hugely worse but there is a noticeable change. My hearing test showed a 10% decrease from the last test in June. When I think about delaying treatment now that I have started to get used to the idea I worry that the next growth will be discovered right in the middle of the school year (my hubbie is a teacher so he is home in the summer and that really makes summer an attractive time to deal with anything like this); or a month before the Bar Mtizvah next March......
Anyway, thank you all again. I will keep in touch. Now back to work!

[Rivergirl]

Suz,
Good luck with your decisions, thanks for sharing as we all sit here in watch and wait and try not to think that the next MRI will show growth.  I wish the Dr's would just say, you have this and this is what needs to be done but they don't, don't know any other tumor that they give you options.  Oh well keep us psoted and good luck with your decisions, you are not alone.