Newbie who also could not find a post button

[leapyrtwins]

Susan -

you should look into both radiation and surgery before making your choice.  I don't know of Dr. Long and didn't find any posts about him on the forum except one by Alicia who ultimately went to House (HEI) in Los Angeles.

While HEI is no doubt a great place, it's a long way to travel, especially when there are probably some doctors much closer to home.  You should look into Cheryl R's doctor @ the University of Iowa (Dr. Gantz).  The group I went to is in the Chicago-area (not especially close to Nebraska, but not as far as California) and they do both radiation and surgery.  If you'd like more information on them, please PM me.

Just my two cents,

Jan

[Cheryl R]

Susan, what part of Neb are you in?             I am in Iowa near Ames and do make the trek to Iowa City to the Univ of Iowa and Dr Bruce Gantz.             www.uihealthcare.com                 There are several from the forum who have had surgery there and they do aprox 60 a year and have for many years.                 I unfortunately have NF2 and have been thru 4 surgeries and feel very lucky we have him in Iowa.   He is not big on radiation so if that is a possibilty would need to see someone else.              Much of ones outcome has to do with tumor size and location,besides the surgeon experience.   
                              Good luck in your AN journey,               Cheryl R

[skamper]

Thanks everyone, I've been so frazzled I almost forgot to post.
Well, the Neurosurgeon says gammaknife or surgery.  Wait and watch isn't an option because of size and location and my symptoms already.  I think the tumor is sitting in a bad place and pushing on the nerve that is making my face numb.  I need to go see Dr. Gary Moore who is a specialist in Otology/Neurotology and Otolaryngology.  He will test my hearing and balance on the 30th. 
Dr. Long does both the gamma and surgery so he isn't bias either way, radiation or surgery.  He said it should come out, he didn't recommend the gamma even though he can perform that procedure.  Because of the location gamma wasn't his first option.  I will be doing research to see what I feel best with doing.  I'm pretty scared about either option, I find myself crying all the time for no reason.  I know it must be killing my husband as well, he trys to stay strong though. 
I need to find out what my timeframe is though, I forgot to ask when they think it needs to be done.  I'm scared I will lose my hearing in my right ear, and I'm also scared of facial paraylsis.  Both, I was told could happen.  I just don't know what to do.  I had to quit researching it for awhile to give my brain and my nerves a break.
I will keep you posted as to my researches.
Thanks to all my new friends for your prayers and support, it has helped me a great deal, more than I will ever be able to tell you.
Susan

[sgerrard]

Hi Susan,

I hope you read the PM from Donnalynn, and that she offered to talk to you by phone. I had the pleasure of speaking to here not long ago, and I can tell you it's worth it, she is a true sweetheart. 

I'm sure this whole thing seems like an enormous deal to you, and it is indeed a serious medical event. But if you look around on this forum, you should realize there are lots of people who have been through the same thing. They may have this or that symptom left over after treatment, and may have had some adjusting to do, but most of them are doing great, and living wonderful rich lives despite it all.

So ease your mind a little. You will make it through, and life afterwards will be good. Different maybe, but good nevertheless. You'll see.

And welcome to the best AN forum you can find anywhere. 

Steve

[Kaybo]

Susan~

OK...who knows WHERE I have been but I didn't see this until today!  So sorry that I was not here early on to give you a great big Texas welcome!!    Sounds like you have received some great info and support already.  Just like you have been told, take a deep breath and a break when this gets overwhelming.  I am a firm believer in "gut feelings" (& w/o sounding like a religious fanatic, I feel like it is a nudging from above) - when you find the right treatment and the right guy (gal), you will just KNOW it.  We are here for you and would be happy to answer ANY questions that you have - no question is too big, small, private, dumb, etc. on here - we've discussed just about everything!  I would be more than happy to give you a call if you would like to chat with someone who has "been there" - just PM me a good time to call and your number (right now I can talk anytime since school is out & we have no outside activities!).  I am ALMOST 40 also and had my surgery when I was only 25 for a "huge" tumor...Look forwar to hearing more from you...

K   

[suboo73]

Hi Susan,

I hope you read the PM from Donnalynn, and that she offered to talk to you by phone. I had the pleasure of speaking to here not long ago, and I can tell you it's worth it, she is a true sweetheart. 

I'm sure this whole thing seems like an enormous deal to you, and it is indeed a serious medical event. But if you look around on this forum, you should realize there are lots of people who have been through the same thing. They may have this or that symptom left over after treatment, and may have had some adjusting to do, but most of them are doing great, and living wonderful rich lives despite it all.

So ease your mind a little. You will make it through, and life afterwards will be good. Different maybe, but good nevertheless. You'll see.

And welcome to the best AN forum you can find anywhere. 

Steve

Hi Susan,  As Steve said, this is the best forum - the folks here are FANATASTIC!
I know this is alot to absorb quickly.  So make sure you take some time for yourself and take a break from it all.

When you are ready, find the best doctors you can, who treat ANs, and go with your 'gut' feeling.
You can do it - stay strong!

My thoughts and prayers are with you and your family.
Sincerely,
Sue

[Vivian B.]

Hi Susan,

Sorry I am late in replying. I am sorry that you are going through this but this is a great place to talk about it. It's great that you have all the options available. It is overwhelming. I felt like you did at the beginning and ended up with a lot of anxiety that frankly got me nowhere as at the end of the day, you still need to deal with it. lYou need to take a step back and digest what is happening and come to an understanding that there is treatment and the tumor is benign. The symptoms could be very annoying. One thing I was told when I was put on W and W is that just because you may want to consider treatment right away, it does not mean that symptoms will go away. As you know these tumors are in a very sensitive area and there are a lot of nerves in the area that are responsible for hearing, facial function etc. The MRIs you need to continue doing in any case. Although you have been advised to have treatment right away, because these tumors are very slow growing, I still think you have some time available to research your options. You will see on this forum, that everyone has done fine, some have had bigger steps to climb than others, but still made it.  Hang in there and we will be right there behind you. Good luck.

Vivian

[Guitarmn50]

Thanks everyone, I've been so frazzled I almost forgot to post.
Well, the Neurosurgeon says gammaknife or surgery.  Wait and watch isn't an option because of size and location and my symptoms already.  I think the tumor is sitting in a bad place and pushing on the nerve that is making my face numb.  I need to go see Dr. Gary Moore who is a specialist in Otology/Neurotology and Otolaryngology.  He will test my hearing and balance on the 30th.  
Dr. Long does both the gamma and surgery so he isn't bias either way, radiation or surgery.  He said it should come out, he didn't recommend the gamma even though he can perform that procedure.  Because of the location gamma wasn't his first option.  I will be doing research to see what I feel best with doing.  I'm pretty scared about either option, I find myself crying all the time for no reason.  I know it must be killing my husband as well, he trys to stay strong though.  
I need to find out what my timeframe is though, I forgot to ask when they think it needs to be done.  I'm scared I will lose my hearing in my right ear, and I'm also scared of facial paraylsis.  Both, I was told could happen.  I just don't know what to do.  I had to quit researching it for awhile to give my brain and my nerves a break.
I will keep you posted as to my researches.
Thanks to all my new friends for your prayers and support, it has helped me a great deal, more than I will ever be able to tell you.
Susan

Hi Susan,
I'm a newbie on the forum also, and your AN seems to be remarkably similar to mine:
http://anausa.org/forum/index.php?topic=11350.0
I'm starting to experience similar symptoms, also: mild headaches, slight puffiness on my left cheek and a little numbness on my left lip (Xmas eve mild tremor on lip 3 seconds). I just wanted to let you know that I *do* have the option for radiation CyberKnife, so I'll avail myself of that over surgery any day. Obviously, I don't know what differentiates your AN location from mine, but it's under 3CM  so why do you *have* to have surgery?
I'll be praying for you Susan.  Nice to meet you...sort of  

[skamper]

Guitarman,
I wasn't necessarily told I had to have the surgery, I think the doc's thought that was the better way to go.  He suggested gammaknife as well.  He didn't sound so sure of that though, he does do both.  I have sent him questions and hope to hear from him this week to see exactly what my options and timeline are.  My facial numbness seem to be pretty bad.  Sometimes I feel like I'm drooling, not sure that I really am though.  On Wed I will see what my hearing loss really is and they will also check my balance.  I know for a fact that it's off, I somewhat tip over a lot.  It sucks.
Did you say your sleep pattern changed?  Are you tired all the time or is it that you can't sleep?  I find myself tired all the time.  The doctor's gave me zanax to try and calm my nerves, but I was tired even before all that.  I have headaches quite often too.
When you have your cyberknife and where?
Thanks for the prayers and good luck to you too!
Susan

[skamper]

Quickly, I just wanted to ask if anyone had slurred speech before radiation or surgery?  I seem to find myself stumbling over words or combining two words and spitting it out as one.  I always just thought I was talking too fast for my brain to catch up with me, but lately it seems to be worse.  I sometimes just can't spit the word I want out.  Does this have anything to do with my AN?  I was going to try and researc it but thought maybe someone else had this too.
Thanks for any help with this.
Happy Holidays to all,
Susan

[sgerrard]

Here is one older post on this question, there are several:

http://anausa.org/forum/index.php?topic=4161.0

The short answer is yes, stumbling over words is quite common. Something about the brain being too busy trying to figure out balance, hearing, etc. and not having enough time to spend on talking.

Steve

[Guitarmn50]

Guitarman,
I wasn't necessarily told I had to have the surgery, I think the doc's thought that was the better way to go.  He suggested gammaknife as well.  He didn't sound so sure of that though, he does do both.  I have sent him questions and hope to hear from him this week to see exactly what my options and timeline are.  My facial numbness seem to be pretty bad.  Sometimes I feel like I'm drooling, not sure that I really am though.  On Wed I will see what my hearing loss really is and they will also check my balance.  I know for a fact that it's off, I somewhat tip over a lot.  It sucks.
Did you say your sleep pattern changed?  Are you tired all the time or is it that you can't sleep?  I find myself tired all the time.  The doctor's gave me zanax to try and calm my nerves, but I was tired even before all that.  I have headaches quite often too.
When you have your cyberknife and where?
Thanks for the prayers and good luck to you too!
Susan

Susan,
It's only over the last month or so (just after my last MRI) that that my similar symptoms started to manifest: the facial numbness (tingling) has started accompanied by the sense that I'm drooling on the corner of my lip...and, the headaches have started. I've always had a stiff neck because of my driving job, but now very mild headaches are cropping up just to the corner of my eye. Sleeping habits: Well, those have always been spotty for me because I work long hour days I typically only get around six hours of sleep.  Over the last couple of weeks, I've only been getting around five hours--right on the dot! Weird!  I'm not unsteady, yet. 
I don't know yet when my treatment will begin: I'm to see my doctor on the 7th.
All the best
guitarmn

[mimoore]

Hi Susan and welcome!
Scary isn't it - don't worry with knowledge comes power!
I was 44 when I was diagnosed. I had facial numbness, fullness in the ear but no hearing loss.
Did they say how large your tumour is?
There is tons to read here but don't let things overwhelm you. When you have had enough go off of the site take a break.
We are here for you!
Michelle  

[anissa]

Quickly, I just wanted to ask if anyone had slurred speech before radiation or surgery?  I seem to find myself stumbling over words or combining two words and spitting it out as one.  I always just thought I was talking too fast for my brain to catch up with me, but lately it seems to be worse.  I sometimes just can't spit the word I want out.  Does this have anything to do with my AN?  I was going to try and researc it but thought maybe someone else had this too.
Thanks for any help with this.
Happy Holidays to all,
Susan

This happened to me for a couple years before I knew about my AN.  It seems better now, if I catch myself doing it I stop and purposely go back and say what I mean sort of retraining my brain.  Oh the things that can be attributed to the AN!

[alicia]

Hi Susan ~ just thought I would post here to let everyone else know we are in contact.

If your slurring has worsened since your diagnosis, it is probably just being overwhelmed and not being able to think straight.  You have so many things running through your mind. 

Keep us posted on your appointment tomorrow    Alicia