Just diagnosed

[stereo]

Hi there,

It is so good to read about your experiences and learn from your collective knowledge base.

I'd like to introduce myself. I'm 50, and never had any serious health issues until now.

I knew I was gradually losing my hearing on my right side, but I attributed it to a family history of deafness. I was the only hearing child in my family. But when the fullness and tinnitus started up, I did all I could to remove the non-existent wax in my ears. Finally went to an ENT to let him do it. After finding no wax, he sent me off to see an audiologist. My audiogram showed a 60 db loss, and I was set up for the MRI.

Found out this past Thursday that I have a 1.5 cm x 8 mm AN. I haven't sat down with the ENT yet. He called me on the phone. I've picked up the MRI CD, but can't really make out where the tumor is. I've started to get names of doctors that I want to talk with.

I don't really fear losing my hearing. My deaf brothers probably think I should have been deaf in the first place. I work at a school for the deaf, know sign language, and and have many deaf co-workers.  I should have no problem being deaf in one ear at work.

I will miss being able to hear music in stereo. Sound is so distorted now, One morning, I walked through the house looking for the source of a new sound, only to find that it was the coffee maker. My ear is only picking up the higher pitched crackling sounds, not what it really sounds like.

I commute by bicycle to work when I have the chance. Saves gas, keeps the environment clean, and helps me stay healthy. It will be a great loss for me if I can't ride. I haven't yet found any comments regarding this. Losing facial muscle control is defintely a fear.

I'll be sure to post updates to my saga as it unveils.

Bob

[Crazycat]

Hey there!

            How's your equilibrium at this point? Mine grew to 5cm x 5cm before it took me out. I'm a professional musician and deaf as a post on my left side. Yet I've been deaf on the left side for at least 6 years. It's just that I thought it was due to the music. WRONG!!!!
This kind of thing can happen to any one. You'll find that most of our afflicted brethren in this forum had nothing to do with loud music or noise. My right ear is fine at this point. But I wear an earplug and can still hear everthing going on; it cuts out all the dangerous frequencies.
I'm still working as a musician. I'm now 48. Interesting: My paternal grandfather, who was also a professional musician, died from a non-cancerous brain tumor in 1942.

    I'm a runner and used to bike 30-50 miles a day - weather permitting - before I began jogging. When my equilibrium deteriorated last year I couldn't run anymore
but I was in great shape from all the work I had done. My equilibrium is good enough now so that I could bike again. I'll be giving it a try this spring and summer.My surgery was on Sept. 21st. Running 2-3 miles a day now and weight training.

     My point is: STAY IN SHAPE!! It will help you get through your treatment and recovery.

 Take care, Paul

[Gennysmom]

Welcome Bob!

I'm recently diagnosed and awaiting surgery.  I, too, attributed the hearing loss to damage...it's been deteriorating for 10+ years, but I expected it to...when I was younger I went to so many rock concerts that my mom told me I would have hearing problems when I was older (I didn't protect my ears then).  So finally this year I went to the audiologist to find out just how much hearing was gone, and how much I had in my good ear, that I found out that mom's theory was wrong (although, there have been studies that say that excessive noise might increase tumor growth rate).  Now I'm stuck with a 3.1 thing in my head.  I've been so hard of hearing in my right ear for so long, I'm not worried about losing that.  My neighbor has a deaf daughter, and I don't have that fear as much as the facial nerve/balance thing as well.  My only symptoms are hearing loss, tinnitus, and a fullness in the ear. 

I agree with Paul, IMO if you are healthy and can keep up a good attitude, I think it increases your chance of doing well through treatment and recovery.  It's like the power of prayer and positive thinking, it's just one more thing that you can do.  I have spent the last two months getting stress out of my life, trying to increase my physical activity (I have had a foot issue for the last year and used to walk 5-6 miles 3+ times a week up until about 6 months ago), and telling everyone that I'm close to to add me to their prayers or thoughts.  That is the good thing about this, most people have time to make these arrangements before treatment. 

There are some pretty great people on this thread that will be right with you as you take this ride in life, and we love to share in each other's successes, and hold each other up for the lows.  Sounds like you have a good family support system, which is great.  I don't know what I would do if it weren't for mom, dad, and boyfriend, getting ready to do whatever it takes for however long to get me back up and running and well again.  It puts my mind at ease for the surgery I face.  And watching these threads about everything is great because I can work on educating them as well about what post surgery life might be like....as I'm sure you've read, the doctors generally don't fill you in on everything (like what Decadron is like). 

Which side is your AN on?  Where are you located?  You have a lot of research to do and there is a weath of information here.  You probably have both radiosurgery and microsurgery as an option.  I didn't look too far into radiosurgery as I'm not a candidate.  Anyway, we're here and there isn't a question that someone won't pipe up and give you thier experience/opinion on.  Good luck and keep us posted!

[Crazycat]

Hi Gennysmom!

           When is your surgery scheduled?
You must be a bird lover! We have a grey cheeked parakeet named Flyer. He rules the roost around here!!

   Oh, about the facial nerve. At Mass General, here in Boston, I was told before my surgery that there would be one person, whose sole job was to monitor the facial nerve to prevent any damage being done to it during the procedure. Make sure that you have similar care provided to you wherever it is you have your surgery. I think that should be standard procedure these days though.

    My girlfriend also has a foot issue. Get this: She was told by a podiatrist that she has a "foot neuroma", a growth that is gradually impinging on certain nerves in her foot, creating discomfort when walking. So far, it's been treated with cortisone injections but it is not going away.

          Paul

[ppearl214]

Hi Bob and welcome.....

I'm sure there is a true range of emotions you are feeling right now with your new diagnosis.  Know that since your AN is deemed "smaller" compared to many others, I hope you take the opportunity to fully research all options of treatment, that I'm sure the ENT will also discuss with you.  There is a wealth of info on this site... but also a wealth of support. Having just gone through the decision making process and having just completed my treatment just over 2 weeks ago, knowing the folks here and their support has really helped carry me through this time.  Know that we are here for you too!

Gennysmom/Kathleen, I know how to find you and will call you later.  Sending you LOTS of huggles as always and will see if we can get Genny to give you a good laugh to help keep a smile on your face!
xooxox


Phyllis

[Gennysmom]

Hi Paul! 

Birds rule!  Cats and dogs just don't compare, and I've had both.  My 3 girls rule the roost as well.

Hopefully they'll determine my surgery date this Wednesday.  I finally meet my head surgeon then.  It will be after 6/25 as that's when I get back from my big European vacation.  It took about 3-4 weeks of intense education on the web before I was at peace with what's going on.  Now I'm just ready to rock and roll with the surgery.  Speaking of, what kind of music do you play?

That's funny, my best friends husband has the foot neuroma thing!  I haven't had it checked for that, my symptoms are exactly what the other 10 people I know that have had plantar faciitis are, so I've self-diagnosed it.  I'm making very slow, but steady progress.

[Battyp]

Foot Neuroma?  OH MY  

Bob, you have all options available to you due to your size.  I'm 8 mos post op and had mine removed by retrosig due to the size and location and brain stem involvement.  Right now I'd not get on a bike but would venture to guess I could do it with a little practice and a lot of laughs!  I've always rollerbladed/skated and thought I had pretty decent balance until all this.

Did they do an MRI with contrast?  if so the tumor should "pop" out and be recognizable.  Or at least mine did but mine was larger than yours.

Sorry you've joining our exclusive club.  Please know that anyone of us on here will answer any questions you have.  We are all in various stages of recovery or treatment and are willing to share what we know, what we've learned or just our opinions. 

Keep us updated!

Did you request the materials from the ana?  They were very good in explaining things in detail on types, questions to ask your doctors etc...

Michelle

[shoegirl]

Hi Bob,

Welcome!  If you would like help finding your tumor on your MRI, if you do a "yahoo" or "google" search of "MRI picture of Acoustic Neuroma" you should find some examples of what they look like and where it may be located.  There was a post not too long ago regarding finding an AN on a MRI if you search back acouple of weeks you may find it.  Once you know where to look it should pop out at you.

Sorry - you have to join our "club" - but the people here are amazing.  I have a similar sized tumor to yours, just had my treated with Cyberknife in Dec.   There are so many wonderful people that are so willing to share their experiences with microsurgery or radiosurgery/radiation.  I think I lived on this site for the first few months after I found out about my tumor.  Thank goodness for the internet otherwise I would have driven myself crazy.  The support here has been great - we are here for you when you need us.

Best Wishes! Suzanne

[Joef]

Hi Stereo !
    Sounds like your way ahead of the game since you already know ASL (American Sign Lang) .. I have a BAHA hearing aid that with it I actually hear fairly well, (but not in stereo, and NO location)  but was wondering ..  is ASL easier to learn while I am hearing? .. should we at least learn a little now in case I lose my good ear?
     Was your MRI done with contrast ?? I looked liked I have a easter egg in my head ! , without that shot before the MRI it can be hard to see the AN...

[nannettesea]

Bob,
I had the same size tumor as you.  Please be sure to explore all the options, not just surgery.  I had a not-so-great outcome, didn't even consider radiation as I didn't want to be "nuked", but in hindsight should have been more openminded.

Good luck,
Nan

[stereo]

Thanks for all your responses and support. I've been busy quietly taking in all the collective knowledge and interesting posts.

Sat down with the ENT today for the first time since he called me with the diagnosis. He didn't tell me anything I hadn't learned from you all and was careful to defer my questions to doctors with more experience with AN. He gave me three names: Dr. Lundey at Mayo in Jacksonville, Dr. Green in Jacksonville, and Dr. Bartels in Tampa. I'm going to start with Dr. Lundey.

Now to answer some of your questions:

Joef: American Sign Language is probably easier to learn if you can associate spoken words with the sign. It's just like learning a foreign language, but easier because many signs can be stored in memory easily because they are so visual.

Gennysmom: I'm in St. Augustine, Florida which is 45 miles south of Jacksonville. My AN is on my right side. Are there pros or cons about it being on a particular side? I figure it's better to have it on my right side, since I need to be able to hear traffic with my left ear as I ride my bike.

Crazycat, my equilibrium seems to be OK so far. Although, just today I felt a little dizzy most of the morning. It hit me when I was drinking coffee so I thought it was a caffeine rush.

Bob

[Battyp]

Bob you're just up the street from me.  Ok, so about 90 miles  LOL  I'm down the coast in Melb.  I had my surgery in tampa with Dr. Brem at Moffitt, JD had his at tampa general with Dr. Van Lovern (I think that's how you spell it)  I was told Mayo wouldn't take my insurance but later found out was the particular doctor.  Main thing is you want someone who sees a lot of these (typical is 30 -50 a career)  Either way..keep us posted!  Do you have your questions ready to go?

I'm thinking about starting sign language classes just in case 1) I lose my hearing and 2) so I can maybe go back as in interpreter in the classroom.

I think there's pros and cons depending on your lifestyle.  I'd say for me not being able to hold the phone and right is a problem since I lost my hearing in my left ear and I'm right handed.  I'm sure though if I lost it in my right ear I'd have more trouble triying to write.  The best part is driving I can hear the person next to me but when I'm the passenger I have trouble with that.

You know it is advisable to stop all caffiene two weeks prior to surgery.  I just read that on some site relating to an surgery. 

[stereo]

The ENT did show me which MRI image showed the tumor. I had seen this one, but was looking for something on the right side. I didn't realize the images were reversed.


I have an appointment May 4th in Jacksonville with Dr. Lundey.

[Battyp]

Stereo have you broken your nose before?  (My son just asked me)

Yeah I freaked as mine was reversed too and thought they mixed up the sides.  Funny to me your AN looks so small but I know to you it's not.  Mine was more the quarter variety.  I just found out my uncle is having ear surgery in jax's will try to find out who he's seeing.  He's retired navy so not sure if he's using a military doc or not.

Let us know how your appt goes.  I was referred to the Mayo origianally but there was an insurance mix up so wound up in tampa.

[stereo]

My nasal passages sure do look like are taking the long and winding path , don't they? I'll have to ask the ENT about it. I did have surgery when I was 14 for a deviated septum. If they fixed something, I'd sure hate to see what it looked like before! No wonder I snore!