NEW HERE

[kabby]

I have been lurking on this forum for a few months, but have not posted before.  I have a right side AN that was dx'd 3 years ago, and I have been in the watch and wait.  However, after my most recent MRI, the ENT that I was going to stated it was time to go to the next step as the AN had grown.  It is 1.6 cm--last year it was about 1.2.  He set me up with the neurosurgeon at Univ. of PA.  I go on 4/28.  Then back to the ENT, also at HUP, on 5/5 for more hearing tests and a consultation to decide what to do.  Surgery or GK.
I have not had hearing on my right since 3 years ago.  Occasionally, I am off balance but not too bad.  I have been getting headaches every night, that wake me up and last until I get up. 
Now I am gathering information so I can ask the neurosurgeon the right questions and make a good decision.  The idea of invasive surgery scares me but so, too, does the idea of confining my head in a frame for several hours.
I am 53 (yikes---I just don't feel that old!).  I have no idea how I am going to make such a major decision so any information is helpful.  I am having some major anxiety about this.  Both the ENT and Neurosurg have resumes that say they specialize in AN--has any one else gone there?
Thanks for your input.

[msmaggie]

First of all, welcome...and sorry about your diagnosis and AN growth resulting in imminent surgery.  I know that news probably sent you into a tailspin.  I had my surgery here in Houston, so can't give you any info about that particular hospital. I'm sure one of the forumites can help you more in that category.  As far as the surgery itself, do all the research you can.  Many of us sent our MRIs to the House Ear clinic in LA.. They will give you a free phone consultation, and even if you have no plans to go here, you will at least have a second set of eyes looking at your situation.  Don't be afraid to shop around for second opinions--it will make you an informed consumer.

I am 60, and although my AN turned out to be a meningioma, the surgery was the same.  It IS abig deal, and you have every right to be afraid at this point!  We all were, and we have safely made it throught to the other side, just as you will.  Do your homework so you know what to expect and ask us all the questions you can think of!

Priscilla

[Jim Scott]

Hi, Kabby ~

Welcome to the forums - and thanks for posting! 

Your AN is small enough for irradiation but the choice of how to address it will be up to you, of course.  Your upcoming consultations should help you make that decision, which is always a difficult choice as both approaches - surgery, radiation, have their own set of risks and no doctor can guarantee the outcome of any procedure.  For what it's worth, radiation is non-invasive (no cutting) but requires enduring the apparatus you mentioned not liking and will mean annual MRI scans for the rest of your life.  The surgery is certainly debilitating but rids you of the tumor, although recovery can take some time.  However, many AN surgical patients bounce right back.  Nancy McDonald, Ernie, Jo and others come to mind.  If you read the various posts in the forums, you'll recognize these names.  There were others before them.  I was one of them.    I trust you could be another.

One of the most significant questions you can ask a neurosurgeon is "How many of these (AN resections) have you performed?"  The best answer should be in the hundreds.  As for age, don't be concerned.  Your health is what matters to the doctors.  I was 63 at the time of my diagnosis and surgery (and subsequent radiation), but had no outstanding health issue and didn't need or take any medications.  My age was never even mentioned.  I did just fine through all of it. 

Others will have more relevant information and suggestions for you.  Watch the thread, stay positive and post again whenever you have a question (or complaint).  I wish you all the best as you travel this road no one wants to be on.

Jim

[Kaybo]

Kabby~
Just wanted to welcome you to the Forum!  Please feel free to ask us any questions - we are here to help you!

K

[cindyj]

Hi, Kabby and welcome!  Sorry that your doctors now feel you should come out of Watch & Wait mode...yes, treatment decision is very, very hard.  But, you will know what is right for you at some point - you will feel it.  In the meantime, we'll be happy to answer any questions you have to the best of our abilities.

Have you contacted the ANA?  They can send you valuable information regarding treatment options, etc. 

Hope you'll keep us posted,

Cindy

[NancyMc]

Hi, Kabby.
I cried for two days when I learned that my tumor had gone from 1.1 to 1.9 after seven years of wait and watch.  Then I resumed my contact with this forum and moved forward toward surgery.  I had always planned to do FSR at JHU as I was frightened by the possible outcomes of surgery.  I have a college classmate who had a huge meningioma removed and had many unpleasant outcomes.  But the somewhat cystic nature of my tumor made surgery the preferred method.
Now that I have been through the process, I would recommend getting it behind you as soon as possible.  Perhaps I have been fortunate in my outcome, but having a very experienced team made the difference.  I would recommend taking the baskets of healthy muffins to surgery as well.  The first thing they said when I woke up in the OR after my 9-hour surgery was "The muffins were very good!"  Then I asked if they got all the tumor. 
If you read some of my posts, you will see that I am actually euphoric 8 days post-op.  Of course, spring is in the air, but I really believe it is the sense of being on the other side of this phase of my life that has made me feel like a new person.
I'm 58, and my doctor referred to me as young.  I thought perhaps he had made a mathematical mistake, but I didn't comment.  He also told me not to do a thing with my hair before surgery, and I thought he was complimenting my style and color!
I do believe that each case is very different, and the outcomes can vary dramatically, but I also believe that those outcomes are not predictable by reading an MRI or discussing what has happened to other patients with similar sized or located tumors.  I strongly believe in finding the most experienced team of surgeons that your insurance will allow you to take advantage of and to fight for your right to employ them.
I wish you the best of luck in your journey through treatment.  Ask away!
Nancy

[mk]

Hi Kabby and welcome.

you already received some very good input. The only thing I would add is that the head frame used for GK is not as bad as it sounds. In fact, for most of the time you don't even have to wear the whole thing, just the outer part, which is really quite light. You can move around freely - the only time when you are confined is during the treatment itself, which is like beeing in the MRI machine (only without the noise).

Marianna

[leapyrtwins]

Hi, Kabby and welcome 

I'm with Cindy - contact the ANA for information if you haven't already.  And, as Kay said, don't hesitate to ask us anything - that's what we're here for.

I had the option of surgery or radiation (my neurotologist does both) and I chose surgery for various reasons.   Interestingly enough, one of the reasons was I totally freaked out by the thought of a frame screwed into my head.  Lots of people have done that and they were fine with it, but I just couldn't imagine it.

Ironically I went on - after my AN surgery - to get a BAHA implant, which is basically a screw implanted in the skull.  Go figure   

Anyway, enough about me . . .

As we like to say on the forum, treatment decisions are a very personal choice and what was right for me - or someone else - might ,or might not, be right for you.  You need to do what is best for you.  Educate yourself, weigh the pros and cons of radiation and surgery, find out the statistics related to side-effects, and make sure you pick doctor(s) who have had lots of experience in treating ANs.  Obviously if you decide on radiation, make sure the doc has lots of experience in that - and the same thing goes for surgery.

Being diagnosed with an AN - is confusing (I don't know about you, but I had no idea what an acoustic neuroma was) and frightening.  The great news is that life after an AN is pretty darn good - and we're all here to prove it to you.

You'll get through this just fine.  And BTW, 53 is NOT old!!

Jan

[anissa]

Hi Kabby, welcome!  You've found a great resource here.  Best wishes as you continue your journey, I hope we can be of great help to you.

[EJTampa]

Hi Kabby,
 
Great advice already given, but I want to add my welcome and of course my two cents .
 
Your hearing is already gone, so that will not factor into your decision.  Boy, I struggled with that one since I had good word recognition and not bad hearing.  Now I'm SSD, but my outcome overall was super-duper.
 
You don't have major balance issues right now.  That's another big one in the radio vs. micro decision war.  Micro removes the balance nerve, which forces your brain to compensate - theoretically eliminating balance issues down the road.  Radio has less of an effect on the balance nerve, and for people with more severe balance issues, could leave them in a state of imbalance .
 
I guess I'm not helping much, am I?  You need to see a physician from both sides, then weigh the options.  I think people tend to chose based on personality.  I am of the type that wants my outcome known right up front.  I chose surgery, because within a week, I would know exactly what I was dealing with.  Others prefer the less invasive nature of the radio, and don't mind the waiting period to see what issues/symptoms crop up over time.
 
In the end, the statistics are about the same for each.  Both have a high success rate for tumor control, and low probabilities for serious complications.  What ever you decide, it will be the RIGHT choice for you.  None of us second guess after our procedures.  This is the hardest part of your journey, and you will feel more at peace once you have chosen and get it scheduled.  The second hardest part of the journey is waiting for the day to come!
 
Keep us posted!  We really do care and want you to feel welcome and unafraid to ask questions.
 
Ernie

[kabby]

Thank you all.  It is confusing but I have known about it for a couple of years so I'm not going into anything totally uninformed.  Before I even talk to the neurosurgeon, I am leaning towards GK.  Invasive surgery doesn't sound too good to me, unless there is some solid reason for it.  I will wait to determine that.  Apparently the neuro surgeon I am going to see--Dr. Jude at HUP--does both. 

I had contacted ANA 3 years ago and could kick myself for not going to the symposium when it was in Phiiladelphia (where I live) about a year and a half ago.  I know that Jefferson Hospital in Philly has a beautiful new neuro science building and advertises their doctors but I don't trust anything that advertises that much!

Thanks again for your help!

K.

[cjtender]

welcome... I too am pretty new to this board but I look forward to getting to know you better