Also a newbie

[Rivergirl]

I am so thrilled with finding this site and hearing all the stories that sound so much like mine, I don't feel so alone. 

[Nancy Drew]

Hi Rivergirl,

Welcome to the club!  Since you wrote in the Watch and Wait section, I assume you haven't had any kind of treatment for your AN.  Please give us some information to work with--size of AN, symptoms, when diagnosed and whatever else you might want to share.  This is a good place to get support and information.  You are not alone here.  Hope to hear from you.

Nancy

[Rivergirl]

I was diagnosed in June and just saw and saw 2 Dr's in Boston yesterday, they were great, lots of information. I had been having problems with dizziness for 2 years, even hit the floor last year and taken out of work via ambulance and they only did an MRI this past June because I kept complaining.  My AN is 12 1/2mm x 3 1/2 mm, tube shape fills the auditory canal. I have compensated well with the dizziness but the pressure, fullness and ear pain is the worse. The MD wants me to do the Vestibular lab, a CT and f/u with another specialist, so that will be in Oct if I can stand this feeling in my head. I am a nurse and sometimes I dismiss stuff with me thinking it will go away and not sure I convey the most accurate picture when I am the patient but I know this isn't right.Thanks for listening.

[Kaybo]

Rivergirl~
WELCOME to our happy little group!  I know that you will get lots of love & support here.  Ask away...we have all been there or are very close to someone who has been.

K

[JulieW4]

Rivergirl,

Being a nurse will have it's advantage as you learn who the best docs out there to treat your AN.  Glad you found us, it's a wonderful place for support.

Julie

[Nancy Drew]

Hi Rivergirl,

Sorry to hear that you have been though so much.  All of the waiting and not knowing can be very frustrating.  Hopefully someone here who lives in the Boston area can give you some ideas on doctors and treatment facilities that specialize in acoustic neuromas.  It is important that you find a qualified doctor who has treated many ANs, and it is helpful to start your research now while you are waiting to see the doctor.  Go armed with a lot of questions.  There are many options for treatment so insist that your doctor(s) explain all of them to you.  I am still watching and waiting, as they call it, since 2005.  I am in the decision process right now because I have had a little growth and some hearing loss this past year.  Second opinions and lots of research at this point, and I have been burning up this board with questions.  I am almost to my decision point and being able to bounce things off people here has helped. No question is a stupid question, remember that!  Keep us posted.

Nancy

[leapyrtwins]

Hi, Rivergirl.

Welcome to the Forum 

One of our moderators, Phyl (ppearl214) is from the Boston area.   I'm sure she'll be along bright and early tomorrow morning to welcome you.

Phyl had CK so I'm sure she can answer any questions you might have about that.

Good luck,

Jan

[Sheryl]

Hi Rivergirl - We're from the Boston/Cape Cod area and my husband had cyberknife done last October at the Beth Israel.  Although he does not have an AN (his is a meningioma), we'd be glad to help you out with any CK questions you may have.  Also, to throw more on my plate, I am a 6-1/2 year "wait and watcher" with a 9th cranial nerve schwannoma - sort of like an AN but on a different (close by) cranial nerve.  Mine is now 12 mm and started out when found at approximately 9 mm with still hardly any symptoms.  I'm also in the health field and I'm not sure if that helps or hinders as I expect quite a bit from my medical cohorts!!!

Glad you found us - keep in touch.
Sheryl & Larry (Spouses doing it together - brain tumors that is!!)

[Jim Scott]

Hi, Rivergirl:

Welcome!  I'm always sorry to learn of anyone with an Acoustic Neuroma but I'm certainly pleased that you found us, as the message forums can be very useful.  The folks who visit here on a regular basis are extremely helpful and supportive and I'm proud to be counted among them. 

I'm sure it's a relief, of sorts, to finally have a definite diagnosis - a reason for the dizziness and other symptoms you've been suffering with.  As you may know, your AN is relatively small but as is often the case with smaller acoustic neuromas, they can cause a lot of problems.  Only you and the doctors you choose to work with on this can make the decision on treatment, but you're probably a candidate for radiation.  As a nurse, you have some advantage over us in some respects.  However,  just about everyone who posts here has gone through the 'AN experience' (sounds like a DisneyWorld attraction, doesn't it?) and has hard-earned experience with Acoustic Neuroma issues..  Although we're not doctors and can't give medical opinions, we can offer practical advice - based on real-world experience - when you need it.  Feel free to avail yourself of the help that is available here.

I look forward to seeing your posts and reading about your progress.

Jim

[fbarbera]

Hello Rivergirl,  As Jim says, it must at least be a relief to have a clear diagnosis -- and one that is treatable.  Please try to check in with this group as you research and learn more about the treatment alternatives that are available.  There's a lot of information to digest and doctos might have different opinions about the best way to go.  Good luck with your process and let us know if we can help.  Be well, Francesco

[Rivergirl]

After reading all the posting last night I finally figured out why I feel so out of it when I go in big stores and shop (Lowes, Grocery etc) it is the disequilibrium of me looking and walking and constantly trying to adjust, thought I was crazy!! And the dizzys that get worse with fatigue and stress, thought I was a baby or something before!! As much as it sucks, I now know there is a reason for my crazy symptoms.  Now I can just be crazy cause I have this thing in my head.

[Rivergirl]

Thank you all, great comfort

[ppearl214]

Hi Rivergirl and welcome.... good to see you here. I see you've met some of the gang and as you can also see, everyone is ready to help support you during this journey, as we tend to call it around here.

Although it may not be all that early *blows kiss  to Jan for the heads up!*.... I am also one of many here in Metro Boston that has had AN treatment. Can I ask who you've seen in Boston already?  MGH? Brigham/Woman's? Beth Israel?  There are many, such as myself, local to the area that have had all forms of AN treatments, so we are more than happy to assist with any questions regarding who you've met with thus far, particular treatment options (surgical vs. Radio), etc.  I see you've met our dear Sheryl *kisses to you and that lovely spouse of your's!*  already... as both of us can fill you in on the teams at Brigham/Woman's and Beth Israel.  TSL/Teresa, MLB/Mary and jcinma/Jane have had radio treatments at MGH (jane also had surgery at MGH)..... many have had surgery at MGH/MEEI (kbonner/Katie, CMP/carrie, etc)..... another lovely lady in elliemae/elaine is like you... in watch/wait mode.  These are just a few names that pop into mind as I type this.

So, we are all here to help... hang tough.... but please remember to take a deep breath... the research can be overwhelming and many find the decision making process the roughest (evenmoreso sometimes than the actual treatment!).... so, if need be... take a step back.... take that deep breath... and know that we all certainly know what it is to walk in your shoes... even when those in our lives don't understand.

Hang in there... and again, welcome.
Phyl

(how did I do, Jan? )

[leapyrtwins]

As usual - you did us proud, Phyl 

[Pooter]

Welcome to our little club, RiverGirl!  As someone said, at least you found it now AND it's treatable in several ways.  Ask your questions.  You definitely will get answers from those of us who have been there.  Your AN is relatively small, so I would presume you have lots of options to consider.  You will find (if you haven't already) that we run the table of people with options.  To Phyl that had CK, to Jan et all that have had surgery, and even to Jim and Scott who had them both (Scott had 2 surgeries and radiation!!).  There are lots of us with experience in all of the options, so ask away!  Again, welcome here!  (Oh, and we're all crazy aren't we?  )

Brian