Another newbie

[DR]

For three years I have tried to ignore the tinnitus in my right ear.  In July it became more pronounced and, at the urging of my wife, I made an ENT appointment.  I am sure you all are very familiar with the routine, so I will spare most of the details!  I received a call on Wednesday from the ENT office informing me that I needed to go for an MRI.  I picked the script up at 1pm and was in the MRI machine 4 hours later.  (I guess having a neighbor and friend who is a Radiologist can have major benefits!)  By 6pm we had the results.  A 1cm x 1cm AN.

I am now looking at all options, the only one I have ruled out is "Wait and Watch."  I feel that I would only be putting off the inevitable and should take action while the tumor is still relatively small.  I would love to hear from others, especially those of you who discovered the AN fairly early while it was still small.

Thanks - Dennis

[Kaybo]

Hi DR and Welcome to the best group in the world but one we would all rather not have had to join!     I can't tell you much about SMALL AN's b/c mine wasn't but just wanted to welcome you now...I'm sure someone will come along soon that can help you out!

K

[Jim Scott]

DR ~

Hello - and welcome!  I'm sorry you're the recipient of an acoustic neuroma diagnosis but pleased that you've discovered our website and decided to post a message seeking more information. 

Unfortunately, I can't offer the specifics you're looking for regarding a small AN because mine was large and surgery was the only immediate option.  I assume you already know that surgery (traditional or endoscopic) as well as irradiation are all possible choices.  Some AN patients want the tumor out of their heads, now and forever.  Others want to avoid surgery and choose radiation.  Both have their individual pros and cons and ultimately, the decision is yours, alone.  You will have to live with any consequences, not the doctor, not any of us.  We can offer our experiences and suggestions but our axiom here is that no two AN patients have the exact same experience - or outcome.  Some surgery patients are running marathons weeks after their surgery, some are dealing with chronic problems years later.  Same with radiation patients; some do splendidly, others less so. 

There is no panacea in sight but knowledge is power and doing research on the statistical efficacy of treatments as well as the reputation and experience of doctors involved in treating AN patients is necessary as it is useful.  We're not doctors but we try to offer practical advice based on our experience.  There are many forums dedicated to specific AN issues.  I suggest you peruse the ones that are relevant to you and take what you can, but don't 'overdose' on information -that can be debilitating in it's own way.  Take a little at a time and ask questions when you have them.  We're 'open' 24/7.  This is a very active site and the folks here are eager to help a 'newbie'.  Just ask. 

Jim 

[Helga]

Hi DR,
seems like only last week I was in the same boat. Mine was 2.2 cm, larger than yours, but I still had the radiosurgery option available. Ended up going for surgery after much deliberating. I am also not the watch and wait type, however, it took me 6 months from diagnosis to surgery, so don't jump into anything too fast, you will need time to digest the news (even if you think you did already), get used to it, and research your options. I would also take into consideration where you live - are both surgery and radiosurgery available near you? who are the surgeons/radiologists? can you travel if need be? is insurance an issue? how about your overall health? support/time off after a procedure? All things I considered.
Just some thoughts. I wish you the very best, prepare for a lot of reading and changing your mind a few times, just don't think it needs to be done next week, take your time.
Helga

[sgerrard]

I feel that I would only be putting off the inevitable and should take action while the tumor is still relatively small.

This boat sounds familiar.

I consider myself lucky to have had my AN diagnosed when it was just 0.8 cm. I too felt that I should act on it, rather than wait, as it was clearly acting up and affecting my hearing. I did Cyberknife at Stanford in Sep 2007, and so far am quite happy with that choice.

Welcome to the forum, I hope you find it helpful.

Steve

[DR]

Thanks for the kind words everyone.  I'm still kind of in shock.  Over the last few days I have spent quite a bit of time telling family and friends... and trying to soothe their concerns.  My wife and I decided not to tell our kids (5 and 7) yet.

I am aware of the two choices - surgery and radiosurgery.  It is so early for me that I have not ruled anything out yet.  I will be looking at all options and talking to many people over the next few months.  My plan (subject to major changes) is to make a decision by the end of September.

I will begin calling to set up appointments this week.  SE Michigan has some very good surgical options including Michigan Ear Institute, University of Michigan, Henry Ford Hospitals, etc.  There are also CK/GK options nearby, but if I go that route I may end up out of state.

Steve - did you consider surgery instead of CK?  If so (and if you don't mind me asking) what made you select CK over other options?

[Syl]

Welcome, Dennis. Acoustic neuromas are generally slow-growing and not malignant, which gives you time to do the research you need to make a decision. Know that you have plenty of company now that you found us. Ask as many questions as you need, including what's with the knit hats? There's usually someone chiming in with an answer. You'll be ok.

Syl

[sgerrard]

Steve - did you consider surgery instead of CK?  If so (and if you don't mind me asking) what made you select CK over other options?

Dennis, do you want the short version or the long version?

The long version is here, posted in May of 2008: http://anausa.org/forum/index.php?topic=3929.msg64193#msg64193

The short version, quoted from the above post:

"I also manage to calm down enough to do other things, including a short family vacation, and a business trip in August to Colorado. During one of the fascinating meetings in Colorado, I am doodling on my note pad, and start making a list. Left side, middle fossa surgery. Right side, CK radiation. I make entries for things like: Recovery time. Likelihood of preserving hearing. Likelihood of facial nerve or chronic headache issues. How long before it is over.

Oddly enough, though it was not my intent, that was the day I decided. Radiation would take longer to finish up; the post treatment effects can drag on for 6 to 18 months. But the initial recovery time would be shorter, the chance of preserving hearing would be better, and the risk of chronic side effects would be lower. When I was flying home from Colorado, I realized that I had decided on CK radiation treatment."

Everyone's story is different, and everyone's AN seems to be a little different as well. You will have to follow your own decision process as you find out more about your AN and possible treatments. You are already off to a good start...

Steve

[ppearl214]

Hi Dennis and welcome.  I truly hope that your research here will help give you answers that you seek.

Like many, I considered surgery vs radio upon first diagnosis... and opted for CK. Why?  Read page 2 of this thread (my journey into AN treatment options) and you will see (towards bottom, in bold/red "Updated Info") that my brain surgeon actually told me she didn't want to cut out my AN and to go have radiation done:

http://anausa.org/forum/index.php?topic=847.15

Needless to say, I was totally shocked that someone who "cuts" for a living told me she didn't want to cut and have the radiation.  She was versed on GK vs CK and I shared with her my research for CK.... and now... 3-1/2 yrs later... she grins when she sees my hearing test and head MRI's.  We both know that we made the right choice for me.

... and I know you will do the same for you... make the right choice for you and your situation.

Hang tough..we're here to help
Phyl

[tenai98]

Hi Dennis and welcome to our group
My deciding factor in having surgery was this:  surgery removes the invader while radiation arrest its growths but still remains living in your head.  I wanted my OUT...it is all a personal choice....
good luck in a speedy decision as this is the hardest part of this journey
JO

[Vivian B.]

Hi DR

Welcome to the forum. This can be a very confusing time. While I understand that the Watch and Wait process can be very nerve racking, it also gives you the opportunity to explore your options and digest what is happening to you physically and emotionally. During this time, you will have mixed emotions but it will allow you to accept the circumstances, come to terms with it and essentially make a decision that is right for you. Good luck!

Vivian

[moe]

Hi Dennis,
I went the surgery route because of the size and location. I ignored my symptoms for MUCH longer, shame on me!
Good for you, you know about the bugger early and  there is no rush to jump to a treatment-it is benign, it is very very slow growing. If you feel new symptoms, most likely it is not because it has started to grow more rapidly. We are just more in tuned to how we feel now that we know there is something in our head!
Good luck with your research, this is a great forum and you may end up with a surgeon that someone has experience with.
All will be well,
Maureen

[mimoore]

Welcome Dennis,
Knowledge is power!
You will know what is right for you, you already know you are not the wait and watch type.
You are not alone. When I read your post that you are soothing others it really hit home. Here you can talk of you fears and concerns freely. I am so happy to have the support of this forum, and now you do too!
Michelle

[Steve114]

I am new at this too - recently diagnosed.

As others have said, there is typically no rush to act. My recommendation is to have a consultation with a very experienced MD. Carefully review your options.

For now, I am doing "watch and wait". The real issue is the growth of the tumor. This will be different for everyone- time will tell. My doctor informed me that he has followed many patients now for over 20 years. In these situations, no treatment has been needed and no further complications. There are serious potential risks to surgery and/or radiation- so any action needs to carefully consider all risks and benefits.

[Kaybo]

Hi Steve and Welcome!
I am so glad that you are able to watch & wait and (hopefully) have no symptoms.  I agree with the Dr. that there are certain cases where no action needs to be taken and that is a good thing.  However, in many more cases, treatment will be necessary because the symptoms are so severe that it is inhibiting lifestyle or life-threatening because of the size or location (brain stem involvement) - that is what happened with me - I had surgery within a week of the discovery of my AN...it was the size of a man's fist and my brain stem was all the way on the left side of my head - NOT A COMMON THING WITH AN's!  Life is great now though!

K