Hello - I guess I am a newbie too

[moe]

Welcome Chris!
Read another post of yours. I had a med-large AN with minimal symptoms, just slow and insidious through the years.
Just depends exactly where the AN is on the nerve I guess. No two stories are alike.
Keep us posted.
Maureen

[chrisransom]

Thanks all for the kind words of encouragement.  I'm drinking it all in.  Not trying to get too worked up about things.  I've read many many posts all over the place in the last 2 weeks - you are correct.  There is a different story for everyone.

[DonaldN]

I found last week that I now have a AN 6x4mm left ear. I went through a month not knowing why the loud hissing, loss of hearing with the "fullness" and dizziness with waves of neausa. After talking to a surgeon then another about the Gamma Knife or Wait and Watch, I feel overwhelmed. The Gamma Knife seemed a good option, but does nothing for the dizziness and neausa along with the hissing.
The doctor said that if I could handle the symptoms "Wait &Watch" would be an option due to it's size. I guess I'm looking for thoughts of my position.

[chrisransom]

Welcome, Donald.  There are lots of people on this site who you can get advice and similar stories from.  I am sure there someone here who's had similar size, symptoms, and experiences.  The good news is that these things are quite slow growing you can take your time making a decision - learn as much as you can.  That's what I am doing having only been diagnosed last month.  Mine is 21mm and the only symptoms I have are a fullness in my left ear and a change in the tone of the tinnitus (from ringing to hissing, echoing and clicking) that I'd had all my life.

Ask questions, read posts, learn learn learn.  It's scary but you're not alone- lots of caring people here to help you.

Chris

[Mickey]

I just wanted to mention that the one time I did feel some fullness in my ear a few years ago when first diognosed I did take a round of steroids. Within the week it went away and I really haven`t experienced it again. Tinnitus is there for as long as I can remember and I`ve tried many things naturally, which have helped over the years which I have mention in posts. Best wishes, Mickey

[chrisransom]

I had my second-opinion visit at Mayo today and it went better than my one at the Univerity of MN.  (I am NOT saying they didn't take care me at the U but it was my ifrst meeting and I was frankly quite overwhlemed by it all.)  This time, thanks in part to ANA and you all, I was better able to ask questions and understand what they were telling me.

Anyway, as with the U docs, they were a bit perplexed as to having a person with very mild/negligible symptoms consutling with them.  Drs. Driscoll and Link both gave me the run down on what I would probably experience if I W&W, pursued GK, or went for surgery.  They said they tended to "lean" toward surgery but they felt that GK was also a viable treatment options.  It sounds like they've done approximately then same number of procedures GK vs surgery - about 350-360 of each.

In my situation they said they could support any decision I made - that all three options were reasonable. 

Soooo - here's what my gut tells me to do.  W&W until June 2011 - get another MRI and audiogram.  If it's growing or hearing is dropping off then re-evaluate at that time,  Until then, pay a lot attention to my health, how I feel, if I perceive any change in my situation, etc and be ready to act on that if necessary.

That's what I told them and they said that sounds like a good plan.

I'm probably 90% on this - gotta digest it for a few more days.

[Jackie]

Chris,

I totally agree with your decision. You are doing your "due diligence" which is how we all arrive at our individual course of action! By June you should have calmed the nerves and be able to reflect on all your information and be able to make not only an informed decision but one somewhat free of emotion. Good-luck, we all share your dilemma.
Blessings to you,
Jackie

[CHD63]

Chris .....

Many of us have agonized over the decision of what to do when diagnosed.  The hard part is all of the medical professionals being convinced of their own recommendations and when they are different that puts us in a difficult position.  Glad you have compassionate and understanding physicians at a highly rated medical facility.  That makes it so much easier.

You are doing a good thing with following your gut.  I know you will be diligent to follow it up if you have a change in your symptoms.

Stay with us and let us know how you are doing.

Clarice

[Mickey]

Way to go Chris! June is just around the corner. In the meantime do more homework on whats going to keep you as healthy as possible. Such things as eating well, exercise, supplements, all natural ideas, power of positive thinking, religion etc. So much has been listed here for you to go over. It has helped me (goin on 4 yrs. stable) and many in the W+W brigade. Whatever the case going into your future you will be in the best shape to have a great outcome for whatever you decide. Best wishes, Mickey

[Jim Scott]

Chris ~

I'm short on time today so I'll be uncharacteristically brief and simply state that I believe waiting until June for another MRI while being vigilant about any increase in your symptoms is a good idea.

Jim

[suboo73]

Hi again, Chris!

Glad to hear you are figuring out what steps you want to take in this AN journey - it sure can be a roller coaster ride!
I did the same thing you will do - had MRI in Oct., then a repeat in April of the following year.
After the second one, with a neurosurgeon visit in-between, i decided on W & W.
I will say it is nice to have several options.  In the meantime, i make sure to schedule my follow-up MRIs.

I like your plan! 
Please keep us updated.

Sincerely, 
Sue

Donald - Sorry you had to join this club but WELCOME, and glad you found the FORUM.  FOLKS HERE ARE GREAT!
Sorry to hear about your symptoms. Please consider additional opinions regarding treatment and keep reading on this Forum!

[G_Man]

Chris - Welcome to our little corner of the digital universe.  I had the same water in the ear sensation about 20 years ago and eventually it lead to the diagnosis Aug. 11, 2009.  I'm lucky as my AN is small.  Let me share something with you that I don't think any of these replies to you has covered well enough.  Joining this organization was the BEST thing that happened to me since I was diagnosed.  From the moment I made the phone call until now I have had only positive experiences from everyone.  And to know me is to love the cranky pessimist that I am.  I got the packet and it had the list of people you could call.  I reached out to 2 or 3 and they were great.  Then there was a luncheon in NYC.  I went and met some of the nicest people on the planet.  Everyone is down to earth and willing to share their experiences and help you with your questions.  This whole experience is difficult, and I can only speak as a W+W so I haven't had the "full experience" yet.  I hope to never have it.  For me, the first year was very difficult.  I wanted that second MRI. So I had something to compare the first one to.  Even though this thing has been in my head for most likely a very long time.  I take it slowly.  I read all the pamphlets.  I joined the forum and got some good advice.  I went to  our first NYC support group meeting last month.  I find there is a great variance to how people cope with this.  I'm still finding my place with it.  One day at a time I say to myself.  I realize now that the symptoms I have now relate to this.  I used to think it was getting older or something that everyone had when I got those dizzy moments, etc. 
I'm lucky that I don't have really severe symptoms.  Some days are better than others. 
In all this rambling what I'm really trying to say is that you've probably found the best place to help you cope with your AN.  I hope you are watch and wait forever.
There is a symposium in June.  I'm going to go because I feel that it could be very good for me to connect with this in a positive way for 2 days (Learn, Share, etc).  You may want to consider going if you have the money and are in a comfortabe frame of mind with it.
Glen

[chrisransom]

I had my 2nd MRI a couple of days ago and I have a hearing test and follow-up visit with my general ENT next week (I'll post that result later).  Back in April the "fullness" seemed to subside then toward the beginning of may it came back even worse for a few days, then subsided again.  Right now I barely nitces it (or I am just getting used to it).  But a few days ago I think I noted less hearing in the AN ear - it's really hard to tell for sure but it seems different.  But I guess that'll be determined next week. 

The Imaing center didn;t gie me a CD with my MRI"s on it this time like they did last December.  At that time I took a peek at them before I saw my doctor and it was obvious that there was something on  the left side of my head that didn't belong there.  I can access my images online but I am debating on whether I want to know or not.  Sort of like having a baby and deciding on if you want to know the gender.  Only there's no bundle of joy after nine months.  Just a blob. 

I'll post again next week - ta ta for now!

Chris

[CHD63]

Chris .....

Thanks for letting us know what is going on with you.  We are anxiously awaiting the "official" report on any possible growth of your AN.

From what I can gather, ANs can change shape sometimes, without really "growing" and cause different symptoms.  That is why we always say that the size of an AN is only one factor in whether it is time to treat, or not.  Much depends upon the progression of symptoms and your own comfort level in waiting any longer.

I have always asked for the CDs of my MRIs ..... in fact, I ask for two copies right up front ..... one for my personal records, the other to take to my doctor(s).  I love your description of deciding whether to know the gender of your unborn baby or not.   

Many thoughts and prayers.  Clarice

[chrisransom]

Good news  - the MRI showed no change since 6 months ago.  My hearing is still very good - no drop in the audiogram.  No change in the symtoms and the very subtle changes I have noted he feels are just me being uber-aware.  These things ahve probably been going on all along and I am now paying attention to very very little things.  We'll see about that!  My ENT recommneded that I come back in 6 months and do it all over again.  So, I'll hang out in here for another 6  months and keep reading all the posts!

Chris