Not diagnosed, but thanks in advance!

[leapyrtwins]

Dood -

you definitely have symptoms that can be associated with an Acousic Neuroma, but nothing is definitive until you have a diagnostic MRI.

Sounds like you're going down the right path.  I'm hopeful you don't have an AN.

Please keep us updated,

Jan

[Doodlette]

Thanks! LOVE your sig...that's just fabulous.

I'm studying MRI scans...LOL. I hope I can get a peek at the screen before I leave and have a better idea. These seem pretty easy to see on MRI.

[CHD63]

Doodlette .....

Welcome to this Forum.  Yes, your symptoms are seemingly consistent with an AN, but there can always be other reasons so try to relax until you have the results from the MRI.  You mentioned you do not know if the MRI is with contrast or not ..... call and check before you go and insist that the order be written with contrast or the MRI is quite meaningless for diagnosing an AN.

The reason for ordering an MRI when going to the doctor for hearing loss is because you have single-sided hearing loss ..... a big tip-off for ANs.  I would not pay for a hearing aid until after the results from the MRI.  If it is an AN, whatever treatment you choose will very likely change the degree of your hearing loss.  I had 80% hearing (20% loss) in my AN ear, 100% in the non-AN ear.  Post surgery I have 20% (80% loss) in my AN ear.  However, with a high-end digital hearing aid it has been a huge improvement and I have no problems hearing in one on one situations.  Still have problems in a noisy environment, e.g. restaurants, large crowds, outdoors.

Best thoughts and let us know how you are doing.

Clarice

[Doodlette]

Thank you. I'll call them tomorrow and try and find out about the contrast. I can't understand why doctors would order without. If you're going to spend the money (or your insurance company is), why not do it right from the start? This *is* an open machine.

On the hearing aid, that's not an option until after I see the ENT again. I get the idea that some of the laws are kind of strict. Either that, or they all just are very careful.

Do any of you have problems with noise? As in being super sensitive to it? I've found it so strange that even though I have this hearing loss, I am hyper sensitive to certain types of noise, usually involving neighbors. LOL. Dogs barking don't bother me, but loud cars do. The bass of loud stereos make me crazy. And then sometimes at home, all of a sudden any noise is like someone poking me with a thousand needles. I have to turn the radio/tv/whatever off and go to a quiet room.

[sybil]

Doodle,

Did you mention when your MRI was? I may have missed that. I am anxious to see what it shows. I also have the sensitivity to some noises. Not only do I get the needles feeling, it can sometimes make me feel a bit light-headed and dizzy. Sometimes I think I am crazy and it feels good to know other people have the same issues.

I have an appointment with a neurotologist on April 6. We'll see what he says. If you get the good news (no AN),  I would like to stay in touch.  Maybe we can help each other find answers. But for now, one step at a time and here's hoping you get good news on that MRI!!

[Doodlette]

Hi Sybil! The MRI is Thursday. I really do have it in my head that I'm going to know something on Thursday, so I hope I'm not setting myself up for disappointment. My plan is to ask the tech about it, and if s/he says I'm just the tech, then walk over to the screen and look. I hope that's not too aggressive.

Your appointment is the 6th, mine (with ENT) is the 8th. So we're close. I do hope you get some kind of answer, and it's something minor and fixable.

[leapyrtwins]

Dood -

MRI techs aren't supposed to tell patients what their MRI shows.  It is highly unprofessional and possibly unethical.  In some cases techs can be fired for telling patients what their MRI shows since they are not doctors and this is not their job.  So, please don't jeopardize your tech's employment.

The hospital where I have my MRIs gives me a CD of my results if I wait around for about an hour after the test is done.  There is nothing that says you can't bring the CD home and view it on your computer.  An acoustic neuroma, especially when gadolinium is used in the MRI, will stick out like a sore thumb.

Jan

[CHD63]

Doodlette .....

The hypersensitivity to sounds is called hyperacusis (see http://en.wikipedia.org/wiki/Hyperacusis).  Not everyone has it along with their hearing loss.  Unfortunately, I do.  Even chip bags being opened send me into orbit!  I have to really watch myself not to jerk at these noises when out in public ...... but it really jars me!

Re:  MRI results.  Like Jan, I always wait for my own copy of the CD after the MRI and I go back the next day (or whenever they say it will be ready) for a copy of the written report.  The test results and report belong to you, not the doctor.  However, you may not want to do this if you will be frightened by what you see or read.  Sometimes a doctor can give you a more hopeful or reassuring way of telling you the results ..... that's your call.  Jan, medium to large ANs show up like a sore thumb, but I'm not sure how well you can tell a small AN ..... there are also many blips and blobs that are simply innocent, non-essential/normal findings that show on an MRI with contrast.  I doubt if the techs will let you look at the screen, which is in a different room than you are for the test.

Good luck on Thursday and let us know what you find out.

Thoughts and prayers.

Clarice

[leapyrtwins]

Small ANs (are well as medium and large) usually show up as "bright" white due to the contrast.

Although they are hard to spot, they can be seen - but Clarice has a good point.  The "untrained" eye might miss them.  Results are best left to the doctor - either the radiologist who writes the MRI report or the doctor who sent you for the MRI.

If you do have an AN, Dood, chances are the doctor who sent you for the MRI will be calling you fairly fast to tell you the news.  Generally the longer it takes to hear from him/her, the lesser the chances are that something has shown up on the MRI.

Tumors, even if they are benign like ANs, tend to get people's attention.

Jan

[CHD63]

One of the reasons I now pick up my CDs on the spot is because I had an MRI on January 23, 2008.  My follow-up appointment with the ENT was on February 4, 2008 (12 days later).  When I did not have a call within a few days after the MRI, I falsely thought I was in the clear and just patiently waited until February 4th, when I was blown away with being given the diagnosis of a 2+ cm AN.  Long story short ..... no, you are not always called immediately when something is found.  If you are not comfortable picking up your own MRI CD and/or report, call your ordering doctor within a very few days and be persistent about getting an answer ...... it's your body and you have the right to know!

Clarice

[leapyrtwins]

..... no, you are not always called immediately when something is found. 

That is just downright appalling! 

I don't know anyone who wasn't called a day or two after their MRI when there was a problem.  Acoustic Neuroma or something else.

This doc wouldn't have lasted as week as my doc, unless he had a VERY good reason for not calling.

Jan

[moe]

..... no, you are not always called immediately when something is found. 

That is just downright appalling! 

I don't know anyone who wasn't called a day or two after their MRI when there was a problem.  Acoustic Neuroma or something else.

/quote]

Umm, me. I got lost in the cracks when I had my MRI and was being followed by a civilian ENT in TX. As usual, I was ignoring my symptoms, going along my merry way, had not heard from the doc in over a month. Actually had to call for my own FU appt., assuming all was well.

 Oops they (staff and MRI place) forgot to mention the abnormal MRI. He slapped it up there, looking at it for the first time. Can you imagine?

I was getting ready for a trip to KS the next day, husband was stationed in WA (couldn't reach him allllll day), continued along my merry way  and went to KS with this booger smashed against the  brainstem. Yea, pretty unbelievable.

Oh yea, hubby returned call at 10 pm my time. He had forgotten his cell phone at home, and decided to do groceries after work....

You just never know!

Oh yea, back on track-Good luck on your MRI on Thurs, Doodlette!

And SYBIL, I'm glad you don't have an AN, but I hope they figure out what is wrong with you. That is no fun, that there is no diagnoses.Hang in there
Maureen

[moe]

sorry about all that purple

[Doodlette]

Doodlette .....

The hypersensitivity to sounds is called hyperacusis (see http://en.wikipedia.org/wiki/Hyperacusis).  Not everyone has it along with their hearing loss.  Unfortunately, I do.  Even chip bags being opened send me into orbit!  I have to really watch myself not to jerk at these noises when out in public ...... but it really jars me!

Re:  MRI results.  Like Jan, I always wait for my own copy of the CD after the MRI and I go back the next day (or whenever they say it will be ready) for a copy of the written report.  The test results and report belong to you, not the doctor.  However, you may not want to do this if you will be frightened by what you see or read.  Sometimes a doctor can give you a more hopeful or reassuring way of telling you the results ..... that's your call.  Jan, medium to large ANs show up like a sore thumb, but I'm not sure how well you can tell a small AN ..... there are also many blips and blobs that are simply innocent, non-essential/normal findings that show on an MRI with contrast.  I doubt if the techs will let you look at the screen, which is in a different room than you are for the test.

Good luck on Thursday and let us know what you find out.

Thoughts and prayers.

Clarice

Clarice, I want to HUG you right now!!! I thought I was just kind of a bad person or something - no one has taken me seriously about it, although one of my doctors wanted to give me antipsychotic medication for it.

I lived in an apartment for a few years and at first it was fine, but gradually, I ended up with all neighbors that liked to blast music at 3 am. I complained to the landlord again and again, but they blew me off and told me if I didn't like it I should move. I did, and I'm a lot happier and calmer now. It's made a tremendous difference in my quality of life.

But I genuinely didn't know there was a name for it, and that others had this. It's so odd the kinds of things that can just start the torment going. I can barely go to wal mart because it's just too noisy. The regular grocery store is normally ok.

If I can blame it on my hearing loss, LOL. Maybe my family won't think I'm such a complainer. I tried ear plugs and expensive noise-cancelling headphones and everything. I just needed a quiet environment.

Thank you!

Dood

[Doodlette]

Thanks so much everyone. I didn't realize there were new replies to the thread...I must have accidentally clicked stop sending me notices. LOL.

I've got myself kind of convinced that even if I do have this, it's going to be okay, as long as I don't have to have brain surgery. I am so scared of surgery, and in the last three years, I've basically had a surgery a year. Nothing major, all outpatient.

The idea of brain surgery makes me dizzy. I know I'm really jumping the gun, but the more I read, the more I scare myself. All of these occasional and vague symptoms...are they something or nothing?

I'm definitely going to ask them if I could have a CD or come back the next day or whatever. Also send a copy to my regular doctor - they always call me when there's any kind of abnormal test. I'm anxious to get this over with.

All of this because I asked my GP to check my ear for wax.