newbie in Kansas City

[rosalie]

Hi,
I've been lurking for a month or so and decided it's finally time to come out of the closet. When I was first diagnosed I was overwhelmed with all the information about acoustic neuromas. I went to many different sites and found some good and some very scary info. When I started to read what people had to say on this site I found it very helpful in making my decision to go with surgery. It seems like a very caring group of people to share your experiences, good or bad, with. Hopefully mine will be good experiences.
Rosalie

[LADavid]

Hi Rosalie
Welcome aboard.  It's a shame you had to have an AN to find your way here but we're glad you're here.  As I am sure you've noticed, there are a lot of wonderful, caring and wise people on this board.  We'll be with you pre and post op.  If you have anything your unsure, concerned, or confused about, please ask away.  In my few months of experience, there has always been someone with an answer or who could direct me to the right place.
Meanwhile, please add your surgery to the calendar -- the link is on the bottom line of my signature below.  Again, welcome to the group.
best wishes
David 

[Jim Scott]

Hi, Rosalie:

Welcome to the forum. 

Although I'm sorry you have an Acoustic Neuroma, I'm pleased that you've been doing internet research and have discovered this site and, specifically, these message boards.  That you find them helpful is especially rewarding.  Folks like you - 'newbies' who are seeking help, information and support - are our purpose for existing.  The fact that most of the folks posting messages are AN patients or caregivers of AN patients is our biggest asset - and yours.  We speak (as it were) from actual experience, not theory.  We understand the fear, anxiety, confusion and occasional sadness an Acoustic Neuroma diagnosis can bring.  We relate to all that on a daily basis and our membership is generally eager to embrace and help a new member, like you, Rosalie. 

I'm so glad you emerged from the proverbial 'closet' and decided to join us.    You'll be receiving lots of welcome and support here in the next 24 hours or so, as our members see your post.  I'm pleased that I could be one of the first. 

Now, if you could share a bit more information about yourself (as much as you're comfortable sharing) and your AN specifics (size, etc) it will help us to 'know' you and offer whatever advice may be needed - if any.  Thanks, Rosalie....and again, welcome. 

Jim

[er]

 Hello Rosalie,

Nice to know you, sorry about the AN. But you are in the right place. And we will be in spirit with you when surgery is time.

eve

[cmp]

Hi Rosalie--

I'm so glad you found this site--it really is an incredible resource and source of community and support. I hope that by now you're feeling much less overwhelmed about your diagnosis and all there is to learn about ANs, and that having made and scheduled your treatment decision is contributing to your peace of mind as well.

Like you, I have surgery coming up soon (June 24), and despite having caring family and friends to talk things over with, have found being able to ask questions here as well as learn about others' experiences to be the main factor in hanging onto my sanity!

Please feel free to ask questions, voice concerns, or just lurk!

And welcome!

[rosalie]

Hello everyone,
A little bit about myself. I'm a 50 year old mother of 2 wonderful kids and 2 beautiful grandkids. I've been having problems with my hearing for several years and finally decided to get a hearing aid. When I went to the audiologist she sent me to an ENT because she suspected a tumor. My first reaction was she doesn't know what she's talking about. But after the ENT sent me for an MRI and the tumor was confirmed I have new respect for audiologists. I only saw 2 doctors before deciding to have surgery.

I feel very comfortable with the surgeon I chose. Our first meeting was was sort of funny. He stumbled into the exam room looking for something for another patient and dropped his fountain pen spilling ink all over the floor. After something about being clumsy he asked if he'd seen me yet. Not exactly the first impression I had hoped for - a clumsy, forgetful surgeon. After talking to him for over an hour my husband and I both felt like he was the one I needed to do the surgery. He was very concerned about doing what was right for me, whether it was with him or someone else. He told me I needed to get a second opinion since this was a major life event. He also told me that if I wanted to travel the best place to have the surgery done was at the House Clinic in LA. I had considered this but decided that if I could find a doctor close to home that I felt good about I would have it done in Kansas City. He's done enough AN surgeries that I feel he has enough experience with them. I just hope he doesn't drop the scalpel or forget where he is or what he's doing!

Rosalie

[lori67]

Rosalie -

Hello and welcome.  It's much more fun here than in the closet!

I'm glad you can see the humor in the clumsy, forgetful surgeon!  I know I had to laugh when I read it.  If it makes you feel any better, I also had a brilliant, talented surgeon who does wonders in the OR - but is a bull in a china shop anywhere else!  I told him to go ahead and knock things over or break things on his way into the OR, but after he was in there he'd better be more careful!

I think it's a good sign when a doctor encourages you to do your research and do what's right for you.  There are a few out there that aren't just in this for the money - they actually care about their patients.  Imagine that?

With 2 kids and 2 grandkids to keep you on your toes, you'll have good reason to recover quickly!  I'm hoping for a good experience for you too!
Lori

[Debbi]

HI Rosalie-

Welcome to our little club - sorry you had to get an AN to get here, but glad you found us!

I found this site about 3 months ago - 24 hours after my ENT told me that I had this thing called an Acoustic Neuroma.  Like you, I was in a state of stunned disbelief - then i started doing my research.  My husband and I were sitting side by side on our computers when he found this site - and he was the first to post.  it took me a couple of days, then I dove in, too.  I got wonderful response from my first timid post - Joe, a fellow New Jerseyian offered to talk to me, which was just what I needed.  (He had surgery lsat year with my surgeons, so had lots of good feedback and advice for me.)

I don't honestly know how I would have gotten through those weeks leading up to surgery, and these past 6 weeks post surgery, without the support and friendship I've found on this forum.  I hope that you will get the same comfort as I have - this is truly a great bunch of folks!

The great thing is that we ALL know what you're going through!  So, ask questions, vent, whatever you need. 

Glad you found us!

Debbi - beating the heat in NJ

[leapyrtwins]

Hi, Rosalie -

I'm sorry to hear you have an acoustic neuroma, but I'm glad that you've found us.

I had surgery (retrosigmoid) a little over a year ago, so I've "been there, done that" if you have any questions.

My side effects were minimal and for the most part temporary, with the exception of SSD (single-sided deafness).  I am a "newbie" BAHA patient - had the surgery in March, just got my processor last week - so if you have any questions about that, I'd be more than glad to give you my two cents worth.

I was going to add your surgery to our calendar, but I see someone already beat me to it 

Jan

[Brendalu]

Welcome, Roselie!
We are a great group of very special people and I know you will fit right in.  If I might ask, which hospital are you having your surgery in?  I lived in Overland Park for a few years and was a frequent flyer at Menorah.  I know there are a lot of hospitals that are great ones there.  As well as doctors.  Keep us posted and we'll be your cheering squad all along the journey.  I will keep you in my thoughts and prayers.
Brenda

[wendysig]

Hi Rosalie -
Welcome to our group!  It is too bad you had to find out you have an acoustic neuroma to get here, but I will tell you this -- when I showed up here two months ago Iwas a wreck.  At first I wasn't too active here as I was also posting on another support group website at first, but it wasn't long before I realized this was where I wanted to be.  The people here are warm, caring, funny and very helpful.  They have become an extension of my family and I couldn't imagine my life without them.  They have given me the support that can only be given by someone who has shared the experience of the AN journey.  Family and friends sympathiize, but only a fellow ANer truly understands what you're going through.  Glad to  hear you have such a wonderful doctor he sounds a lot like mine in the sense that he cares about you getting the treatment and support YOU need.  Not what someone wants you to have.  Feel free to ask any and all questions and join in the zanieness that sometimes goes on here.  It's what keeps us all sane!

Wendy

[Kaybo]

Hi Rosalie~
I am fairly new (a few months) to this forum, but had my surgery 12 years ago - this is a wonderful place to be if you are dealing with an AN.  Please feel free to ask any questions - no question is ever stupid (the teacher in me HAD to say that!).  If you would like, you can PM me your phone number and I would be more than happy to chat with you!  I am in the Panhandle of Texas!

K

[cindyj]

Hi Rosalee,

I also welcome you here!  Sure you can already tell what a great place it is to be if one has to have an AN.  I can't offer any treatment advice as I haven't made any decision yet...but it's great that you were able to come to such a quick and confident decision!  Love how you and your surgeon met!  Know you will be able to benefit from so many here that have already been through surgeries, especially so many recent ones with such good detalis about their recovery process.

Take care,

Cindy

[rosalie]

Thanks everyone for the warm welcome. When I started reading posts on this site I didn't think I would ever register and talk with anyone. I just figured I would read everyone elses posts and stay in the shadows. I'm really not one to join groups, but as my surgery gets closer I feel like my family just doesn't get why I'm so emotional right now. For the most part I'm OK but every once in a while I start to realize what an impact this could make on my life and I get overwhelmed. I think it's the waiting for the surgery that's driving me crazy. Once I made the decision to have surgery I wanted to have it done right now - not in a month. I just want it to be over so I can deal with whatever comes next.

Jan,
I've been following your BAHA journey. I think I will probably check into that after I see how much different it is being completely deaf in my right ear. Right now I don't have much hearing left. We were just on vacation last week and I was hiking along a stream with my husband and son. The stream was on my right side. After we turned around and the stream was on my left side I mentioned something about hearing the stream. My son looked at me like I was crazy and said "Mom we've heard it for the last 2 hours." It's times like that when I realize how little hearing I have on that side. It would be nice to be able to hear from my right ear again.

Brenda,
My surgery will be at St. Lukes hospital in downtown Kansas City. I was hoping it would be at North Kansas City Hospital since my daughter works over there, but I guess I have to go where the doctors say.

Rosalie

[wendysig]

Hi Rosalie -
I understand how you feel when you say your family doesn't understand why you are so emotional right now.  This is a very emotionally charged issue and most people who  aren't going through it don't seem to get that.  My husband certainly doesn't.  It upsets me and saddens me sometimes that he does not regard this as a big deal, just something to get over and move on.  Losing your hearing in one ear and facing surgery is a big deal and if it makes you emotional, deservedly so.  This is a scary thing to go through, especially if you do not get the support you need.  I hope you will feel free to voice any fears, doubts and emotional needs you have here.  We are here to help and support you in any way we can.


Wendy