New here, and question

[PS]

Hello all, I'm new to this forum and possibly AN. I'm scheduled for a MRI next Tuesday, with and w/o contrast, to see if I do have an AN. I have had bilateral sensioneural hearing loss as long as I can remember, but it is asymmetrical. That, along with an abnormal ABR test, is why they are looking for an AN. Since it sounds as though most everyone with an AN seems to have unilateral hearing loss, I was just wondering if there was anyone here that sort of fit my profile? I do have tinnitus, and sometimes full feeling on affected side.
Thanks-

[Sam Rush]

Except for the bilateral hearing loss, most of us fit that profile to a certain extent.  AN's are very rare, and you probably have something else, but at least you are lucky enough to have a Dr. that looks for AN. The MRI will be the answer if it is AN. Hoping for a negative MRI.

Sam

[PS]

I guess what I was really wondering was if anyone else here had bilateral hearing loss prior to diagnosis with AN...anyone?
I won't know for sure on my results until after the holidays, and have just been trying to read up, JIC. I've learned a lot just being faced with the possibillity!

[sgerrard]

Besides the significant loss on my AN side, I had a little loss on the right side before diagnosis. I guess it depends on how asymmetrical you mean. I would call mine something like 50% loss on the AN side, 5-10% on the other.

The nice audiologist doing the hearing test said the smaller loss on the right was "typical of someone 10 years older than I am."  Getting older ahead of schedule is not something I need.

So, as with most questions on AN it seems, it is possible, but not definite. 

Here's hoping the MRI has only good things to say.

Steve

[HeadCase2]

PS,
  Good luck on your MRI tomorow, hopefully they won't find anything [that isn't supposed to be there].
Regards,
 Rob

[PS]

Thank you for the responses, and well wishes. My MRI was rescheduled to Wed, so one more day for that. (just what I needed...after I'd steeled myself up for it!)
I won't see my ENT until after Christmas, and probably New Year's due to my traveling, so Merry Christmas to all!

[CarrollMoore]

Hello,
I too am new here and will have a MRI w/contrast tomorrow.  I have lost low tone hearing in both sides, though more significant in left side.  I have had what I call "Pond Noise", sounds like nights sounds from a jungle for numerous months that the ENT said was caused by the loss of low tone hearing.  Balance issues is what led me to the ENT after more than 2 months.  I have and am being treated for irregular (Rapid and slow) heart rate and fluxuating blood pressures (High & Low) since August.  Last week Cardiologist's Nurse Practitioner finally suggested that I be seen by an ENT in relationship to the dizziness and now I am to have the MRI tomorrow, and am scheduled for an ABR & ECOG on 1/15/2007 and will be seen by a Neurotologist immediately following the tests.  I hope that it is Meneir's but the meds the ENT started me on in the event that it will be Meneire's has had no effect.  From my own research, I have discovered that large tumors can have an effect on heart rate & blood pressure.  I have also had 5 instances of double vision that happened the first time in February.  Anyone out there that can relate please post ASAP.

[CarrollMoore]

Also, I do have loss in the high pitch ranges but the low tones are all but gone.

[lori67]

Hi Carroll and welcome.

Yes, i can relate - I've been treated for high blood pressure and an irregular (very fast) heart rate for years.  In my case it was due the the AN pressing on my brain stem, which controls those things.  Once I recovered from the surgery, my blood pressure went down and my heart, while still fast, is not racing like it used to.

Blood pressure and heart rate problems can be from a lot of sources though, so I'm certainly not suggesting that you have what I had.  In fact, I'll keep my fingers crossed that you don't!

Good luck with your MRI - I hope everything comes back squeaky clean for you.  If not, we're here and we'd all like to hear the results.

Lori

[sgerrard]

I can certainly relate to "Pond Noise", though I call it crickets myself. My own hearing loss is middle and high frequencies, but I think a variety of patterns are possible.

I'm not sure what meds the ENT would have put you on for Meniere's, but it wouldn't surprise me if they took a while to have an effect, so it may be too early to say on that. Getting the tests done is the main thing. There is not much point speculating on what it might be or could be, the thing is to get some testing and scanning and find out what it is.

I guess your MRI was today, I hope the result comes back with nothing out of place, let us know when you find out.

Steve

[CarrollMoore]

Hi all,
Thanks for your responses.  I had my MRI and brought my films home.  Scans are showing  2 tumors (1 is on my brain stem itself).  I haven't told my family about second yet (just a couple of prayer buddies).  I can pick up the written report tomorrow and that will give me the dimensions.  I will see the Neurotologist on January 15.  This all seems like a dream that I can't wake up from.

[HeadCase2]

Hi Carroll,
  Sorry to hear about your MRI results.  We all know how alarming that can be.
  If you want to measure the tumor size on your MRI, most MRI viewer programs have a measurement tool.  It allows you to click on one edge of the tumor and then click on the opposite side, and it will tell you the length you've marked.  If the meaurement tool isn't there, there should be a centimeter "ruler" on the MRI image to provide scale.
  This ANA site, and the people on this forum, recommends that you seek out doctors with a lot of experience treating these tumors.  That would mean seeking out experts in tertiary teaching hospital settings.   Local doctors rarely have seen enough of these types of tumors to provide them with the experience and knowledge needed.
  I hope you're able to relax enough to enjoy the holidays.
Regards,
  Rob
 

[sgerrard]

Hi Carroll,

Sorry to hear about the MRI result. Does the report say 2 tumors, or is that your reading of it? They can be confusing, with so many different angles and shots. I would like to hear what you find out from the report itself, and how the radiologist phrased it. They have their own "special" language for describing these things.

Although these tumors can sound scary, I am impressed by the number of people on this forum who have had large tumors on the brainstem that are successfully removed with exellent recovery. There are neurosurgeon/neurotolgist teams that are very experienced in these situations, and it may be worth to seek them out. Where are you located?

Post back as you learn more, we are here to help you find your way, and to give you support any time you need it.

Steve

[firewalker]

Hi Carroll,

I'm so sorry to hear about your 2 tumors. WHAT A SHOCK! I too was recently diagnosed (Oct) with a 2.8cm on my right side and yes, have experienced bilateral hearing loss for the last 18 years. I am planning my translab surgery with Dr Brackmann at House Clinic in LA on 1/30/08 and am not looking forward to it. I'm grateful that I could wait until after the holidays to do it but at the same time have anxiety about waiting. I scoured the internet to learn about what the heck an AN is and who I should trust to do my surgery and am happy to travel across the US for my treatment. Feel free to drop me a personal note if you'd like to talk.

Be well,
~Firewalker

[er]

Hello CarrollMoore,

I am also sad that you have the 2 tumors my prayers are with you. We are here for you.

Hello PS,

That was one of the signs I had but I didn't know it at the time. I was more upset at the fullness in my ear than anything else.
What ever it was I wanted it out.
My prayers are with you that it is not a tumor or anything else seriouse.
eve