Greetings from a lurking newbie

[imnocleaver]

Hello all,

I've posted a couple of times prior, but wanted to officially come out of "lurk" status.  I discovered this board shortly after discovering I had a freeloader living in my noggin, and have been checking in regularly to read posts since that time.

My AN was discovered incidentally while doing an enhanced MRI of my brachial plexus to figure out the cause of my chronic neck/shoulder/back pain (on the opposite side of my person).  Got way more than I bargained for.  Was sent for a follow-up the following week to confirm.  My AN is but a wee one, only 5mm, but is apparently fearful of my brain and so has decided take up residence as far away as possible from any firing neurons by jamming itself squarely up against my cochlea at the far end of my IAC on the left side.  

Big thanks to the best radiology tech on the planet, without whom I might have never known that something was definitely wrong.  You see, it has been over two months since my inital MRI and, to this date, my original neurologist has YET to let me know I have a tumor.  Only returned one of my calls, to tell me they did not yet have my results (turns out, they did).  Had to make the diagnosis and do all research myself after demanding my records from his office.  I read the MRI report alone in the car, got home and almost broke the internet googling up all things acoustic neuroma, then followed up with "real" doctors and got confirmation that it was, indeed, an AN.  

Thanks to my tech's subtle hints, I knew it wasn't just "a fluke" as the neuro nurse had said it might be, I knew which side it was on, and knew that I was going to need to look beyond my local neuro for answers.

Many thanks to all on here who have unknowingly helped me with my AN education over the past couple of months as I sneaked about, reading a multitude of posts.  This board and those on here have proven to be an invaluable resource!  

[leapyrtwins]

Cleaver -

lurking isn't a bad thing - but I feel it's so much more useful for lurkers if they "come into the light" so that they can share their experiences with us and so that we can help them.

I didn't see any mention in your post of what you plan to do about your AN.  It's small, and I'm sure you've been told you can watch and wait, but I'm curious to know if you have a game plan.

Along those lines, have you contacted the ANA for their informational brochures?  As you say, the forum in an invaluable resource, but the ANA's literature is also.

Jan

[imnocleaver]

Got the brochures right away...I pored over them as if I had to pass medical boards.  Tried to get the husband to read them, but since he wanted to try and dwell in the land of denial for as long as possible, that could ruin it for him.

The game plan is still a work in progress, so I'm kind of W & W by default.  So far, have had an appt with a neurotologist at UTSW med center and gone back for hearing tests.  Next up on the 30th is ABR and vestibular testing (which, from what I've read, is a real barrel of monkeys...they warned me not to eat for four hours prior lest I toss my cookies).  Next month I meet with the neurosurgeon and again with the neurotologist to go over my results and get their recommendations.

They offered an appointment with one of the radiology gurus to discuss options, too.  The concern regarding radiation, however, is the proximity to the cochlea (AN is right up against it; no spinal fluid between the two).  They feel that it would get some peripheral blasting, as well, and at the very least, it could pose a problem after the fact when swelling occurred.

After our initial meeting, my case was presented at their weekly (biweekly/monthly maybe?) skull base jamboree, and supposedly the consensus among the team was unchanged regarding surgery vs radiation, although bear in mind, this did come from the surgeon. 

The upcoming tests should help reveal whether or not it is located on the superior part of the nerve, so that we'll have a better idea of whether or not hearing preservation will be probable.  Right now, I'm getting a 50/50 chance due to location of it.  I find it very inconsiderate of my AN not to have started its growth just a few millimeters down the road in order to spare things I'd like to keep in working order, like my cochlea and vestibular apparatus.

(side note...I need to edit my first post to say "radiology tech" instead of "radiologist" so as not to confuse)

[mellowrama]

Hi Cleaver, sounds like you're doing your research!  I think the w&w is good thing to do and not rush into anything as I have changed my mind many times since diagnoses.
It will be good to know if your hearing is effected...Good thing for that tech!
melinda

[sgerrard]

No Cleaver,

FYI:
A radiologist is the doctor who reads X-Rays, MRIs, and other diagnostic imaging. A radiology tech operates the imaging machines.
A radiation oncologist is the doctor who prescribes radiation treatment and develops the plan. Radiation therapists operate the treatment machines.

Gotta learn to talk the talk.

For hearing preservation, I think closeness to the cochlea and hearing nerve is a problem for both radiation and surgery. I'm not sure it would be a basis for choosing one over the other. It is indeed inconsiderate of the AN to choose to nestle so close to them.

I had ABR and vestibular testing, and found it rather pleasant. The technician was very gentle, I never felt nauseous or dizzy, and it was curiously fun to see a video of my eyeball movement. All I had was a little eye flutter (nystagmus) lying on my right side, and a weak reflex on the AN side, indicating the AN was probably on the inferior branch of the vestibular nerve. If I had more vestibular problems, though, I might have found the experience less enjoyable.

Hope it goes well for you.

Steve

[imnocleaver]

FYI:
A radiologist is the doctor who reads X-Rays, MRIs, and other diagnostic imaging. A radiology tech operates the imaging machines.
A radiation oncologist is the doctor who prescribes radiation treatment and develops the plan. Radiation therapists operate the treatment machines.

Gotta learn to talk the talk.

Dang!  I thought I had fixed it correctly.  For what it's worth, my main man of the MRI world who got me all set up, injected the contrast, made sure the machine didn't suck any flying objects into me, etc.,  has RTR after his name, which I think makes him a radiology tech, but I suppose that could also be the acronym for "Really Tart Radish".  One never can tell.   

Glad to hear that your vestibular testing wasn't altogether horrid.  My balance is still relatively unaffected from what I can tell in day to day activities, so hopefully that bodes well.  I just worried when the nurse was going over all the things I couldn't do prior to testing (like eat), especially since I'm the type that can't so much as even THINK about reading in a moving vehicle without getting a headache, that it could get really ugly for everyone involved.

Mothers will already need to shield their impressionable children from me that day, since they will allow neither makeup nor coffee prior to the exam.  Oh, the horror!

[epc1970]

Imnocleaver
I just wanted to say that your sense of humor is so great and that will help you through whatever path you take. Good for you! and Good luck with that vestibular testing-I declined mine opting for the element of surprise after surgery-I was rewarded with 12 hours of projectile vomiting after surgery  Why know that ahead of time?-that was my thought process! Keep us posted on your progress.
Erin

[chatty cathy]

Cleaver, are you referring to UTSW in Dallas?  I have been using UTSW for 2 years.  I see Doctors Roland and Doctor Mickey (love Dr. Mickey).  I had gamma knife May 2007 with Doctor Hittson.  So far have been very pleased with my decision.   

[Jim Scott]

Hi- and welcome - imnocleaver ~

I'm glad you decided to cease lurking and start posting because you bring  a savvy, comprehensive synopsis of your AN situation, along with a refreshingly impish attitude to the forum.

I can't add much to the prior posts except to mention that I hope you'll have a relatively easy time of it with the upcoming ABR and vestibular testing.  Let us know the results and how they affect your plan on when and how to address your AN.

Jim      (I'm no Ward Cleaver but I might have been Eddie Haskell).

[leapyrtwins]

Mothers will already need to shield their impressionable children from me that day, since they will allow neither makeup nor coffee prior to the exam.  Oh, the horror!

With a sense of humor this great, I just have to ask - are you sure you're not related to Lori (lori67)?   

Good luck with the exam.

And Jim, for some reason I think I could picture you as Eddie Haskell LOL

Jan

[imnocleaver]

Thanks for all the welcoming words...

Melinda:  As far as hearing goes, so far I've only have slight loss of high frequency on the left.  Aced my word recognition, even though I had to suppress laughter while yelling out words like "MUSHROOM!" and "TOOL".  I kid you not.  My juvenile tendencies tend to be unleashed during stressful situations.

Steve:  I hope my vocabulary test failure regarding all things radiology has not permanently blacklisted me from obtaining one of your prized caps sometime down the road.

Erin:  12 hours of projectile vomiting?!?  Egads.  I don't think I'd want any warning, either.  Unless I could make sure a few deserving acquaintances were close at hand.

Chatty C:  Yes!  UTSW Dallas.  And one of my doctors will be Dr Mickey!  I was supposed to meet with him previously, but there was a scheduling conflict at the hospital, so I will meet him for the first time early next month (which I guess is almost here now...where did September go?).

Jim and Jan:  From what I've read during my lurkdom, I concur with Jan and your own evaluation, Jim...you might just be Eddie Haskell.   

[sgerrard]

And Jim, for some reason I think I could picture you as Eddie Haskell LOL

Perhaps this will help:



 

Steve

[leapyrtwins]

OMG!

Please tell me you don't have any pictures of me in my "youth" 

[DR]

I discovered this board shortly after discovering I had a freeloader living in my noggin, and have been checking in regularly to read posts since that time.

 This board and those on here have proven to be an invaluable resource!

This forum is chocked full o' nuts... I mean very helpful individuals. 

IMO the info contained here saved me countless hours of research.  The members provided first-hand experiences that greatly reduced my initial fears.  The ability to share with and learn from them has been a source of strength for me.

Glad to see another newbie like me!

[Kaybo]

Jan & Lori are NUTS!!   

K