hello from a newbie

[laurenfor29]

my name is lauren and i am 38 years old. i am married, we have two boys 12 and 8. i live in Iowa city Iowa. and i and blessed to have the university of Iowa taking care of me. i am at the beginning of just being diagnosed. i am not even sure of the size of my tumor, it has already made me completely deaf in my left ear and i have severe tinnitus,, my ear feels very numb, so there is nerve damage.. i went to the oto docs at the u of i. had a hearing test and they said we would like a MRI. i was like well whatever i am deaf and severe ringing with no cure to fix what was going on. so who cares. i suppose if my insurance will cover it i will do it. two weeks later they had me come in for a MRI. at this appointment i was alone i thought no big deal. just a pic of my brain. so after i left i got a phone call..  come back now we need more pics... i was like ooo.. kk, then i started to worry.. so after the second mri i came out and was told my doc wants to see me right now.. upstairs rite now.. so still all alone the walk up and across the hospital was awful.. so i was told and then he said i needed surgery and when do i want to do this and then i left. i guess i was just so grateful it wasn't cancer. now as i drive away from the hospital a second time everything starts to sink in, i have a tumor and i need brain surgery, yikes. i am really freaked out it has only been 5 days since finding out. my anxiety is through the roof and i am scared and worried.  i live a very busy life not only the boys but i own and opperate a salon, i have been a hair stylist for 13 years, my husband Sam and i own a concrete company also.. i am an Avon lady,, and i have a moonlighting gig as a waitress,, so you see i have alot on my plate and i guess my fear is i may loose everything, i have already missed work because i just feel awful.  well so.... hello to everyone and i am grateful and thankful for this forum.  i really have alot of questions and i could really use the support.. 

[moe]

Welcome!

Whew you are one busy lady! Once the shock of the diagnoses wears off, you can stop and get more specifics, and tackle this thing in a nice orderly way like we are supposed to do.

(I can't believe your doctor said you need brain surgery and when would you like to schedule it )

There are a number of posties from IA  who I'm sure will be on shortly

Find out the exact measurements, and if there is any brain stem involvement. That will help determine the "approach" choices for surgery- either brain surgery or CK(cyber knife) or GK (gamma knife).

This is a slow growing, benign brain tumor, and unless it is the size of an orange, it can come out when it is convenient for you.

You will most likely have millions of questions. That's what we're here for. To support/give advice/add humor, etc.

I too had hearing loss/tinnitus/imbalance issues. Went for the MRI, they never called me back. When I made my own appt for the MRI, I found out I had a brain tumor and needed surgery.
Actually my first thought was "Well, no wonder I've been feeling so crappy!" Mine was considered med-lg, and I had surgery 2 1/2 months later. 
Give us more specifics and I'm sure you'll receive lots of feedback.
Maureen

[Desilu]

Hi Lauren,

Wow, that was a lot to swallow in one gulp! Just take it slow, one step at a time. I know you are feeling overwhelmed but you will get through this. We are here to help. You might want to contact the ANA and get a free packet of information that gives you the basics of just about everything and a list of people on the willing to talk list. Sometimes just talking to someone that has been through this experience can help calm your nerves and help you to think a little clearer. Maureen has given some good advice and I'm sure it won't be long before others will also be sharing more information with you. If you would like to talk, send me a personal email. I wish you the best on your AN journey. Ann

[Kaybo]

Lauren~
Hello and WELCOME...to a group you probably don't want to be a part of but has THE BEST people around!  I know it is a LOT to digest right now, but take a deep breath and know that everything is going to be alright!  It is scary to hear "brain tumor" but you are in good hands.  Things might be different for a while, but I am proof that you can go on & have a GREAT life...even after brain surgery!  I, too, am close to your age - I have a 12, 8 & 7 year old (all girls) - however for me, I had them all AFTER i had surgery.  I was only 25 when they found my "huge" tumor.   Please feel free to PM (left) me - I'd love to call and chat with you...

K   

[Cheryl R]

Lauren,   I have already sent you an email.           I assume you saw Gantz and not Hansen.   Gantz can be a bit pushy and the size and location of the tumor can play apart in how soon you should have surgery.        In most cases you have time to wait and choose when.     Gantz is not for radiation but that can be done for some smaller ANs but would need to see another dr for that and would be out of state.  
We know here what it feels like for finding out about this and what will happen.    Very scary time.       There is a normal life again past surgery.     You are already living with what some do not have till past surgery.          The recovery time though is usually around 4-8 weeks and maybe some past that to really feel good again.        If you have already lost the hearing then Gantz will do translab.       We are lucky to have a hospital so close with a very experienced surgeon as that is not close to many people.
         I wish you well and ask us any thing you need and we can be of help!
                                                               Cheryl R
  

[pjb]

Wow you do have a lot on your plate but you will be receiving very informative advice from the devoted people on this forum.  The only thing I have to offer is research, research, research you have to get a copy of your MRI and see how large it is then you will know what your options are. Also the hospital in California HEI will give a free consultation when you send them your report and/or films I have read nothing but great things about HEI. Also there is plenty of literature to get from the Acoustic Neuroma  that will be of great assistance in your diagnosis but just remember this is slow growing and benign. I am sure once everything settles down you will make the right choice and everything will be just fine.

My prayers and thoughts are with you.

Pat

[CHD63]

Lauren .....

Welcome to this forum of caring, supportive new friends for you.  First of all, take a deep breath .....

I know exactly how you feel ..... going to a "follow-up" appointment alone and being told I had an acoustic neuroma that needed to come out sooner, rather than later.  I was numb and could not even think of what questions to ask.  I made it to the car where I called my husband and sobbed for 10 minutes before I was able to drive home.  Then I calmed down and began doing my research .... some of which scared the socks off me and some was very reassuring. (Be sure to send for the ANA materials, if you have not already done so ..... they are very reassuring!)  Made appointments with specialists and when the decision for treatment was made, I strangely completely calmed down.

I pray this will be the case for you.  You are in good hands at the U of I.  (For what it is worth, I was born in Iowa but have not lived there for many years. )

Ask away with any and all questions.  Many of us have resumed our lives in a very positive way following surgery ..... sometimes with some adjustments, but very useful, productive lives.  This is not an automatic major life-altering event.  It sounds like you have already lost your hearing so you are already adjusting to that.

Let us know how you are doing.

Clarice

[leapyrtwins]

Lauren -

you'll get through this and the good news is that there IS life after an Acoustic Neuroma.

Being diagnosed is scary, but in the end things will be just fine.

Jan

[Debbi]

Hi Lauren-

Well, I see you've been warmly welcomed, but I'll say "welcome" just he same!

Like you, I viewed the MRI as a great big nuisance and inconvenience, so went in to the doctor's office by myself expecting to be told to get a hearing aid.  Sure was a big surprise to hear "you've got a tumor in your head!"  As much as I had not wanted to get a hearing aid it suddenly seemed a whole lot better than brain surgery.  However, we do what we must. 

As my fellow forumites have already said, you most likely have time on your side which means that you can get other opinions.  One thing you may find helpful is to get several copies of your MRI (they will usually burn CDs for free or minimal cost) and send one to House Ear Clinic in Los Angeles.  HEI will do a free telephone consult with you once they've seen your MRI.  Even if traveling to LA isn't an optionfor you, it's still good to get an extra set of eyes.  And, frankly, HEI is viewed as being among the best in the world in treating acoustic neuromas. 

For me the worst time during this whole adventure was the first few weeks when I was trying to come to terms with having a brain tumor, and trying to find out what my treatment options would be.  Once I found the right surgeons and booked my "date", I seemed to calm down quite a bit. 

Just know that we all know exactly what you are feeling and experiencing, and we're all right here if you need some support!

Debbi

[Lizard]

Welcome to the forum, there is a wealth of information out here and lot of caring folks, please feel free to express anything and ask as many questions as you need to!

I remember the shock of it all, but this will pass and you will come to understand that we all do go on.  You may have to cut out some work before the surgery and for sure for a while after, but you should be able to go back after recovery.

You need to make sure you also weigh all your options, what is the size of your tumor and are you a candidate for radiation?  It may or may not be an option for you.  But look into it and also try to get a second opinion.  Some surgeons want to take is ASAP, but others may take a different approach, but either way it has to feel right, if your gut is telling you this is what you should do then go for it. Don't rush into anything you are not ready for or feel OK doing.

Hang in there,
Liz

[knakag01]

Welcome Lauren, sorry we had to meet this way but so glad you found this wonderful resource.

I know this can be a very difficult and confusing time. There is a lot of great information here and a ton of caring people who are happy to answer questions and listen.

I wish you the best of luck on your journey. Take it one day at a time and don't hesitate to reach out for support. We are here for you!

Kim