Newbie introduction

[oHIo]

Hello everyone.  I’ve finally decided to come out of hiding and introduce myself.  I starting lurking on this discussion forum at the end of June when I was diagnosed with a 1.8cm AN extending from my right IAC to my CP angle.  Symptoms that led to my diagnosis were two episodes, four months apart, of disabling vertigo that put me flat on my back for five days.  After the second episode, my balance never fully recovered.  An ENT noted a small sensorineural hearing loss in my right ear but 100% speech discrimination.  I am going to vestibular rehab to help with the balance issues.

I am in the watch and wait mode while I explore surgical options, get multiple opinions, and come to a decision that I can live with if things do not go well.  My fears are compounded by the fact that I am a pediatric neurology nurse who knows that no option is without potential risk.
 
I feel that I already know many of you as I have read and reread every post on this board.  Today I am finally ready to be an official member of “the clubâ€?. 

[Larry]

Welcome aboard oHIo,

Given your extensive research, the watch and ait mode (same as me) is not a bad option. A 1.8cm AN is still "under the threshhold" of all options being available to you. Only if your everyday life is affected would you have to choose something. These things don't grow that rapidy and if you can avoid surgery or radiation treatment, then do so.

cheers



Laz

[Boppie]

Welcome Ohio, I was born and raised in Batavia, Ohio which is about 30 miles East of downtown Cincinnati. If you have questions, we all speak your language.   

[satman]

Hi oHIo, dont sweat any kind of surgery,believe it or not,
that is the easy part.
It sounds like you have some issues with this,but at 1.8 cm  I would worry , simply knowing it's there
is enough to drive you crazy in itself.
WE ARE HERE FOR YOU.

[oHIo]

Thanks everyone.  Once the initial shock was over, I am starting to not like any treatment option.  I am having constant dizziness (thank goodness no more vertigo) and tinnitus, but I know they both may be present after removal.  I'm trying to pretent they don't exist.  Do you think wishing will make my tumor go away  
Boppie, I'm in Amelia..grew up around the Eastgate area.  Batavia...our county seat.  Small world.

[leapyrtwins]

oHIo -

hello and welcome to the forum.

I personally can't speak for radiation or watch-and-wait, but as Satman said, surgery isn't that bad; afterall, you are asleep LOL

I'm not a nurse, but I work for a national association of nurses (anesthetists, to be exact) and I found them a wonderful source of information when it came time to chose my treatment option.  In addition to my doctor, my collegues were very helpful in telling me what I could expect from each possible procedure.

I'm a little over 4 months post-op and doing fine.  I have a few issues, but nothing that I can't live with; you learn to adapt.

Whatever treatment option you chose, please know that we are here for you.  ANs kind of suck, but this forum is a great place to be.

Jan


 

[Mary 117]

Greetings oHio.
We come from everywhere and welcome everyone. The people here are wonderful, supportive and have a tremendous amount of information about everything AN's to pirate ships. Life is a journey and we are gald to help with yours. We are always here!

Mary
2cm Middle Fossa, HEI, Dr. Brackmann,  05-24-05

[Pembo]

I'm from oHIo too, near Cleveland.  My presenting symptom was constant dizziness, my AN was over 4 cm and surgery was my only option. I can tell you that the dizziness was gone after surgery. My dizziness got so bad that I ate very little and laid down most of the time, which is hard to do when you're a mom of 3 little ones.

Welcome to our club and stay strong.......

[4cm in Pacific Northwest]

Welcome Ohio

Sorry for the reason you have became one of us- but so glad to have you aboard. You will find here a wonderful group of caring people -in the forum (this has been my experience since I came on the “AN journey ship� in June 07)

“a pediatric neurology nurseâ€?… oh boy now we someone to help us put those medical papers terms into layman’s language. Eg “optical ointmentâ€?  in one postie’s terms (AKA Adrian) is called “goopâ€? (personally I think “gooped upâ€? is perfect description of post op eye issues treatment)

Welcome aboard the AN ship. The journey is never dull here … sometimes you may get a little motion sickness but there are lots of great people here to support you through the rougher seas.

Welcome!

“4�

[Jackie]

Hello oHIo,

My Mom was from Ohio, and I can remember my Dad used to kid her and say"Ohoho". May I also send geetings your way, all the way from Portland Oregon. I totally agree with you none of the options are appealing to me either, so I am in the "watch and wait" mode, with the hopes, symptoms continue as is and don't change, and that "miracle of miracles" appears soon! Ahhhh tis nice to dream, huh? Realistically speaking, though, if your symptoms are manageable and your AN is small enough, why not take time to study your options??

Jackie

[Jim Scott]

Hi, Ohio: 

Allow me to add my welcome and to admit that my only connection to the state of Ohio is that I drove through it on the way to California a long time ago and still recall driving in a torrential rainstorm, somewhere around Springfield, that was so forceful, I couldn't see past the hood of my car but I couldn't stop or pull over because I couldn't see anything.  Anyway, I obviously survived and whenever I'm caught out in a hard rain, I still remember that wall of white rain that I drove through in Ohio, all those years ago.   O.K., it isn't much but it's all I have. 

At 1.8 cm, your AN is small enough to allow options being available to you.  With your medical background and connections with other medical professionals, I'm sure you'll come to a sound decision regarding treatment.  Unfortunately, no AN treatment can be guaranteed to be free of possible post-op complications, as you know.  That is the hard part of having one of these things.  The good news is that surgery and radiation techniques have improved drastically in the last few years and AN patients now have a better chance of coming though surgery and/or radiation without the problems AN patients often had to endure, previously. I know because  I'm one of them. 

Jim

[satman]

Jim also stayed at a holiday inn once.
Sorry I could'nt help myself,ha,ha

[oHIo]

Jim..would you consider driving through Ohio again?  We have had a terrible drought this year and desperately need some rain. 
4cm..optical=eye   ointment=greasy goop that prevents you from seeing 

I spoke too soon about no further vertigo.  Friday morning at 5am I woke up to the familiar 'can't figure out which end is up and whether it is me or the room spinning...or both.'  A call to the neurotologist, steroids, valium and phenergan have allowed me to be able to sit semi reclining as long as I don't move my body or my head.  I could live forever with the other symptoms but the vertigo is going to force me to make a treatment decision.  I see the doctor again at the end of the month.

Thanks again for the warm welcome.   

[Obita]

Welcome aboard oHIo and I am glad you decided to appear!

I truly am sorry you ended up with an AN.  Had you ever heard of this invader before you were diagnosed with one?  There is a physician on here that had never diagnosed an AN then, ended up with one himself.  No one knows what the darn thing is until they or a loved one ends up with one.

Hang in there and good luck, Kathy

[oHIo]

Obita  I had heard the term acoustic neuroma but I really had no idea what it was.  When I was told (by the office nurse since the MD was out until the end of the week) that I had an acoustic neuroma, I was thinking okay, acoustic=hearing  neuroma=tumor.  I have a tumor inside my ear.  Okay, as long as I can have surgery on Friday and be back at work on Monday...not a problem.  Imagine my shock when I realized a craniotomy was involved     Forget outpatient surgery. 

Unfortunately, part of my decision when to have surgery...and I believe that is the option I am leaning toward...is based on time I can get off work.  I had major lung surgery last December, also for a benign tumor.  I'm not sure what's up with me and the benign tumor thing, but I can certainly think of better ways to get time off from work.  A vacation would be nice.