New to AN, need your input and help...

[wind6]

I had my results back in about 4 hours...I agree..be a pest!!!

[SVTCobra]

I was told to wait 48 hours before calling my doctor... so that sucks.  My doctor took almost 2 weeks to give me the results of my ABR test. 

[JHager]

Hey Cobra,

Glad you got your MRI done.  Unless your doctor actually has his/her own MRI, you probably had it done at a radiology center, right?  If that's the case, you can call them directly - they will provide you with a copy of the radiologist's report.  This is a just a one-page summary of your MRI, but it will indicate if they found an AN.  This is exactly what I did, and as I recall, I was able to pick up my report the next day.  Although I couldn't actually see the pictures until I met with my doc, I at least knew it was an AN, and walked into that doctor's appointment both prepared and informed. 

It was actually sort of funny - my neurotologist was putting on his best 'I have bad news for you' act as soon as he walked in the door.  Very concerned look, serious expression, MRI film tucked beneath one arm.  I think it threw him quite a bit when I started talking treatment options for him, but it also made for a much more pleasant discussion.  He didn't have to calm me down about my brain tumor, so we were able to talk treatment right away.  Very helpful.

So, I highly recommend calling the radiology office to see if you can pick up your report.  One caveat: if you do have AN, take the measurement on the report with a grain of salt.  Radiologists may only see a handful of these in a lifetime, and may not know how to properly measure them.  My report read 'Probably 2.5 cm Acoustic Neuroma'.  A 2.5 cm AN is right on the medium/large boundary, and I began my treatment research based on that number.  However, when I met with the neurotogolist, he did a second measurement, and it was actually over 3cm, which is definitely a 'large' tumor.  Use the radiology report as a starting point, but wait for your doctor to do a second measurement.  (My 3cm AN, it turns out, is pressing against my brainstem - not a good candidate for radiosurgery.)

Okay, I'm done - sorry for rambling on!

Hope all goes well - keep us posted!

Josh

[dgrummer]

My husband was able to pick up his MRI the next day - and was told to take it to his appt with the neurologist that was scheduled for the next day.  So we were able to see there was something there before we ever had a chance to talk to a dr.  Doesn't really cause for a good nights rest - when you see a blob but don't know what it is.

But I wanted to 2nd the comment on taking the MRI report with a grain of salt.  His film didn't come with a report - but when we finally got a copy a few days later - it read his AN was 2.5 x 7 cm - yeah - that's right - 7CM!  After much freaking out - I finally was able to have several other Dr's confirm it wasn't that big - it was a typo on the report. It's more like 2.5 x 2.8 cm.  They still haven't corrected the report - but I guess that doesn't matter.  We are using the measurements Dr. Brackman stated - I figure he's seen enough to know what size he is looking at :-)

dana

[SVTCobra]

The doctor's office called today and said he's received the report, started reviewing it yesterday, and he wants to review it further... and that he'd call me back today or tomorrow.  Well, obviously today is shot (and he didn't call).  If he doesn't call tomorrow, I guess I'll call the radiology clinic.

As weird as it sounds, I'm hoping they find out what is causing my problems.  I think I have a bigger fear of the results coming back showing no explanation, with nothing being done to figure out my problem.  I know... that sounds weird, but that's how I feel...

Thanks.

[JHager]

Cobra,

You're not weird at all! Being able to put a name on the cause of your symptoms is SOOOOOO much better than not knowing!  Even if it comes back that you have an AN - at least you're not in the dark anymore.

Knowledge, from diagnosis to treatment to recovery, is power when it comes to your health.

I would call the doc first thing tomorrow morning, and not hang up until you get an answer.  Better yet, if you can spare the time, be at the door when the office opens.

Good luck, and keep us posted!

Josh

[jw]

Hey, Cobra.

I completely understand how you are feeling, and I think that Josh hit the nail right on the head.

I'm having my MRI  in under 2 weeks and I'm feeling the same way that you are.  One the one hand I feel pretty odd and don't want people to think that I want to have a brain tumor.  However, at least it will provide and explanation to me and offer an answer for what I've been experiiencing over the past 5 years.  In fact, I didn't even know that my one-sided hearing loss was unusual.  If they say I don't have an AN, then I'm faced with the question "what's wrong then?"  If I do have an AN, at least there's some comfort in the fact that it's benign and treatable.  You're not saying "I hope, oh I hope, please let me have a tooo-more."  You're saying "I hope that there's an explanation for everything I've been going through and that it's not going to be anything that's too bad."  And that you're not having to go through months of further tests, waiting for the results and not having any answers.

Good luck tomorrow.  I hope that you can get some sleep tonight while waiting.

John

[SVTCobra]

Your replies have really given me some encouragement for the day!  Thanks so much.  Me and my wife are dying to know the results of the MRI.

I do want to know what is happening with me, as all of us do for ourselves.  I felt weird admitting that I want them to find something so I know what is wrong, but it's the truth.  Now, I realize we are all in the same predicament at one time or another.  When my hearing went out 15 years ago, I was told "it was probably just a virus that attacked my auditory nerve, don't worry about it".  Well, that's fine and dandy if my hearing stayed that way instead of getting markedly worse with my speech recognition going in the crapper as well.

I've struggled over the past few weeks to come up with what could make an ABR come back abnormal to the point of ordering an MRI, if it isn't an AN?  I've lived with the hearing loss and tinnitus for many years, but the vision probs really bug me.  And, during the course of last summer I was experiencing short term memory problems - which is frustrating being an engineer.  I chalked it up to getting older, but I was forgetting things left and right... which is unusual for me, as I've never been this way.

I originally never looked into MS as the cause as well, but it makes me wonder... my wife  brought up MS, and some symptoms seem to match, but who knows?  I assume symptoms of MS would show up on the MRI as well as lesions on the nerves?

Thanks for your words of encouragement, we will see what today brings in the way of results (and hopefully a phone call).

[SVTCobra]

Well, just as I predicted, my doctor called me this morning and told me my MRI came back normal.  So, that's actually good news because there isn't anything desireable in having a brain tumor.

He told me that he wanted to see me on Friday because he wanted to discuss my way forward and some things on my MRI, so who in the world knows what that could mean?

I guess I'll find out on Friday.

Thanks to everyone for your support...

[JHager]

Cobra,

Hurray!  Congrats on not joining the club! 

Now, I hope that your symptoms are explained by something simpler and easier to treat.  Keep the faith, and please keep us posted!

Josh

[jw]

Cobra,

I'm sorry that your membership here was DENIED!     Seriously, though, that's very good news.  Whew!  Must be a load off your mind!  (No pun intended).  If I'm not mistaken, that makes 3 people within the past 2 weeks that have had MRIs rule out an AN.  This looks like a very positive trend.  Now, the old saying says that good things come in 3s.  Perhaps that can be extended to 4 when I go for my MRI the week after next?

I guess the people in the forum will give you some time to pack up your things and get OUT OF HERE.  Maybe I'll have to take my leave of these very nice people, too.

JW

[SVTCobra]

Thanks.  I'm actually glad it wasn't an AN.  I'm anxious to see what else could be causing this, so that will be my new quest.  I'm curious what my ENT dr. wants to discuss on Friday.

John, good luck on your pending MRI, I hope all turns out well.

[SVTCobra]

Well, I was mistaken on my ECOG test results... it did come back abnormal.

I've been diagnosed with Meniere's disease along with hydrops.  I was under the impression that my ECOG test was normal, but my ABR was so abnormal that they addressed it first with an MRI to rule out an AN, then deal with the Meniere's And hydrops due to the abnormal ECOG test.

I've been put on a low sodium diet with meds.  I didn't realize it, but my "good ear" is going downhill too, so I've got to really be careful.

Good luck to everyone else, and I hope your MRI comes out good John!  Thanks!

[knd]

My ENT found my AN.  You must get an MRI with contrast right away.  Forget about any other test.  This is the one that will tell you FOR SURE!

[SVTCobra]

My ENT found my AN.  You must get an MRI with contrast right away.  Forget about any other test.  This is the one that will tell you FOR SURE!

knd, my ENT had an MRI with and without contrast performed on Monday of this week, and it came back clear showing I do not have an AN.  I originally thought that's what I had, but the ECOG test showed it's Meniere's / hydrops.