Hello - I guess I am a newbie too

[chrisransom]

Just saying hello to you all who read this.  Just found out in the previous couple of weeks about my AN.  No serious symptoms yet - have a ringing in my ears but I've had that my entire life (almost 50 yrs)  but last summer it changed and split into several tones. Then after that my ear felt full - so I had a good cleaning in August but it never really felt like they got it all - like I had water in my ear after a shower.  Then in December 2010 the tinnitus tone changed again so I went to my local ENT who did an MRI and then sent me to the University of Minnesota to see a Neurotologist and , well, here I am. 

17x21 mm on the left side.  No loss of hearing - no other symptoms.  U of M  said they were a little amazed that I was there because most people have more advanced symptoms than me for as big as it is.  So, today I am in the wait and see mode and am still considering the options. Who knows what tomorrow will bring.

Anyway - hello to all you fellow waiters.

Chris

[Kaybo]

Hi Chris!
Sorry you are here but glad you have found us!  We are here for you so feel free to ask us any questions that you might have!  So great that you aren't having too many symptoms!

K   

[Jim Scott]

Hi Chris - and welcome to the ANA discussion forums. 

Although receiving a diagnosis for an acoustic neuroma is no fun, it isn't the end of the world - but I'm sorry you have to deal with this.  However, you do have options and, most likely, time to sort them out if and when the tumor shows growth.  The types and intensity of symptoms differs with each individual.  I trust your AN will remain stable and of course, should you have questions, please feel free to ask.  This is an active website forum and we not only welcome you but, more importantly, we want to offer you our collective support.  Please keep us updated on your situation.  Thanks.

Jim

[Mickey]

Hi Chris! I am a fellow W+W goin into 4 years now. What you are saying sounds very familiar to me. I`ve had tinnitus for at least 30 years with it actually changing in tone over the past 5 years. Hearing still good and AN is "stable" (.12x.06) on left side with MRI` done yearly now. I know how your feeling and just wanted to lend my support whatever you decide to do. I`m hoping to stay this way staying as healthy as I can naturally hoping tommorow will bring good news. Best wishes, Mickey

[CHD63]

Hi Chris .....

Really do not have anything additional to add, but wanted to welcome you to this forum of caring, supportive friends.  Also, I wanted to remind you that the ANA puts out excellent free informational materials.  See:  http://www.anausa.org/index.php?option=com_aicontactsafe&view=message&layout=message&pf=4&Itemid=195  They contain a wealth of information and much reassurance.

Since your symptoms seem to be stable for the moment, you have time to do some research on your options.  In the meantime, let us know what else might be of concern to you right now.  There are many regular posters on here who are very willing to share their experience from a patient's point of view.

Many thoughts.  Clarice

[Mark241]

Hello Chris    Welcome!

[chrisransom]

Thanks for the kind words.  It's a little nerve-wracking and I'm trying to just roll with it.  I really don't want to have a thing that has an Association!  I mean, you never hear about a Liver Spots Association or a Deviated Septum Association.  But as long as you're here it's comforting to know there are others to look to for advices, support and help.  Thanks!

[suboo73]

Hi Chris,

Sorry you had to join this exclusive club, but WELCOME!
I am here with my sister, and we are both in Watch and Wait mode.

Sometimes, W & W is nerve-wracking for me - but i am grateful that modern medicine has the non-invasive MRI test that can track my AN.

I am so glad you found the Forum!
Continued success in W & W!

Sue

[chrisransom]

What do you think of second opinions.  I initially saw a general ENT doc who referred me to the University of Minnesota - which I visited a week ago.  But I am fortunate to also be within very easy driving distance from the Mayo Clinic in Rochester, MN.  I am considering a second consult at Mayo just to hear (ha ha) their point of view.  Is this a worthwhile thing to do?  I don't want to info overload but not sure if I'm there yet.

[Kaybo]

I'm all for 2nd, 3rd, 4th...opinions!!

K   

[leapyrtwins]

The number of opinions is totally up to you; do what you are comfortable with.

Some gets lots of opinions; others (like me) only got one.  I was lucky enough to be referred to a neurotologist who does both GK and surgery and he had lots of experience.  I liked him, trusted him, had complete and total confidence in him and his skills, so it was a no-brainer that he would treat me.  My biggest dilemma was which treatment I would have.

Jan

[Cheryl R]

If you feel you want a 2nd opinion, then go for it.              Come on down and check out Univ of Iowa too.      Several from here have went there.                                                 Cheryl R

[Jim Scott]

Chris ~

I concur with the folks that advise you to obtain second/third opinions - with the caveat that if you find a doctor that, as Jan did, you feel confident with, trust his judgment and skill, go with that doctor and his recommendations.  Like Jan, I was fortunate to find that 'special' doctor - a neurosurgeon - on my second consultation, the first being a total waste of my time (he was intimidated by the size of my AN and fudged on how many AN surgeries he had performed.  All red flags, for me).  My trust in that 'special' doctor was amply rewarded with a very good outcome to the surgery and later (planned) radiation.   Do try to avoid information overload and remember that in many cases, you'll receive conflicting advice.  However, ultimately, the decision on treatment remains in your hands.  Of course, your friends here at the ANA discussion forums stand ready to support whatever treatment choice you make.

Jim

[chrisransom]

Second opinion visit scheduled at Mayo Clinic for Feb 15.  I have been reading many (many-many) of these posts over the last week or so and am learning more each day.  I've read all of the brochures provided by the ANA with my membership - very interesting and a bit scary.  But I am coping well - not freaked out - yet.  If the folks at Mayo Clinic doesn't tell me anything definitive I just may keep going south, Cheryl! (not a bad idea in winter in Minnesota anyway).

[sunfish]

IMO, good decision on going to the Mayo Clinic.  I like the ANA statement on the site's home page about having this treated by doctors with plenty experience.  I had CK at a site where they'd only "zapped" a couple ANs, and my followup has been less than stellar.  Although I was quite upset by the so-so followup in the beginning, it's improved.  Nothing serious, just trouble getting help with further symptoms and side effects.  My only regret is not having gone to a much more experienced team.