Just heard today

[Rebecca - arkofhope]

Hi. I'm fresh today -- just went to have a hearing test w/ my audiologist and found out my hearing loss in my left ear has become twice as bad in 3 years.

I've already gone thru radiation for a brain stem tumor in 1985, have had tinnitus for 20+ years, so I'm a bit pissed to learn about AN.  I have the symptoms and I'm so glad my dr was quick and upfront about her thoughts.  But I know how important it is to have support/especially with people who have gone thru it, so I am here.

I see an ENT Aug. 22nd who will then send me to have a freakin' MRI (I heard the Open  MRI's aren't good enough  for ear stuff  - is that right?) 

Just for good measure, I have an appt with an oral surgeon the 23rd for a spot on my tongue that gets puffy (had it for over a year).  He will prbly biopsy it and see if it's benign or malignant. 

So, is AN going to be like my brain stem tumor --- we will never know what caused it, and then I'lll just go on with life (most likely having routine, confining mri's for the rest of my life)......

Guess now might be a good time to invest in some stock with the mri builders. Gotta get somethin' out of those wondrous tubes of claustrophobia.

Peace and smiles,
Rebecca

[sgerrard]

Well hello Rebecca, and sorry you have to join us, but welcome, since you do. This is a good place to get support, there are all sorts of cases and outcomes, and lots of good people who will be there for you through thick and thin.

I don't know about the Open MRI, but an MRI with contrast is certainly the best way to confirm a diagnosis of AN. They light up like a little Christmas tree light. I don't believe anyone knows what causes ANs, but at least they can't pin them on any bad habits, so you don't have to stop anything bad you might be doing.

And yeah, you will probably be getting them periodically for a while. So go stick your head in the big washing machine (it sounded like a heavy metal band warming up to me), then go stick your tongue out at the oral surgeon, then come on back and fill us in on the news.

Steve

[neal r. lyons]

Hi Rebecca.  Sounds like you've already been thru more than most.

Like Steve said:  MRI with contrast- the "Gold Standard" for detecting Acoustic Neuromas.

I hope you won't have to join the AN club with an AN, but if so, you will find lots of support.

Best wishes to you-Neal

[Ronnie]

Hi Rebecca,

Just wanted to let you know that you can have an open MRI done as long as you get it done with contrast.  I have had two and they both picked up my tiny AN --- 2.5 mm. 

best of luck to you

Ronnie

[Richey]

Hi there,

  I have had a number of MRI's with contrast and was told that open MRI is not the right tool for AN's.
Fortunately they don't phase me I usually go to sleep. Some folks get something before hand to calm the nerves a little. I hope it turns out that you do not have an AN but it's good that you have a doctor that is aware and wants to know for sure.

Hang in there and let us know how that MRI looks.

Rich

[Jim Scott]

Hi, Rebecca:

I'm truly sorry that you may have an acoustic neuroma but at least you'll have the benefit of this site and the forums.

You will need a 'closed' MRI - with contrast (a needle is involved)  - but unless you're claustrophobic, it isn't so bad.  I find them relatively boring.  If the MRI shows that you do indeed have an acoustic neuroma, it may be a lot like your 1985 experience.   Incidentally, no one really knows how or why these tumors develop. I suspect genetics - but that's just speculation and I'm not a doctor and never played one on TV.   

Assuming the AN is small enough, it'll be treatable with radiation, which, as you know, is non-invasive.  You could experience some complications following radiation but that possibility shouldn't be a major factor in your decision regarding treatment.  Surgery would be the only other option, besides 'watch-and-wait' which is only feasible if the AN is not growing and you have few or very mild symptoms.  Unfortunately, your tinnitus will most likely remain, no matter what path you take.  It's possible (not guaranteed) that you could lose most or all of your hearing in the affected ear.  If it turns out to be an AN, ask your physician about this.  Annual MRI scans will likely be required following treatment but ultimately, that will be determined by your doctor. 

I trust that the spot on your tongue will test out as benign, as you have enough to deal with, now. 

Jim

[susier]

My tiny AN (2-3 mm) was found through an Open MRI.  I highly recommend it especially if you are the least bit claustrophobic.  I sat and watched an episode of "Friends" while having mine.  Just make sure its with contrast.  Good Luck.

[Battyp]

Rebecca let us know how it goes.
Is your mouth numb? I know I have developed a hard knot on the side of my tongue from biting my tongue due to the numbness. I'm post op but know you can have facial numbness pre.  Let us know how thrngs turn out.

M

[Rebecca - arkofhope]

Update:  my tongue surgery, the doctor, and everyone else was perfect! Healed great.

However, I am having the worst time with the MRI place & my doc. The MRI place read the request wrong and did not put the contrast dye in. And my doc -- just seeing her for the first time/not a regular doc of mine...and don't have a reg. doc yet - sucks for lack of a better word and long details of what has happened.

I can go back to the MRI place and get the open one with contrast; however, my instinct is telling me to just forget that and start over with a closed one with and w/o dye.
The radiologist did find a 2mm abnormality on my right side, BUT my severe symptoms are on my left side where he said it was normal.  Seems odd.
I grew up south of Houston and had care for my first tumor from TX Children's & MD Anderson. They treat patients like royalty at MDA. But here in GA I have found docs to be really crappy, ignorant, and definitely with no bedside manner.
I know they aren't all bad, but the goods ones are certainly hiding.

It really sucks to have to have added stress while going thru first diagnosis.  My stomach feels tied in knots and has for 3 days. I haven't told my Mom yet, because I was waiting for the MRI results. Since I have to wait longer to do it again, that's even more frustrating. She's in Iowa; I'm in GA and she is a worry wort. I really want to tell her, because she worked as a patient rep for 9 yrs in St. Lukes, and she si great at finding tons of information.

But I am torn between that and feeling guilty for burdening her when the first test hasn't even been done.

 :oPardon the length of this -- I can't sleep and really need to get things off my chest to, a screen, or future cyber friends. 

 :(I've had tinnitus for 20 years - progressively has gotten louder.
 :(Have severe hearing loss in left ear - pretty much deaf in that ear. Have had for 5-7 years. Got twice as bad w/in the past 2 years.
 ;DNo facial symptoms.
 >:(Mental issues since brainstem tumor in '85 - short term memory loss. Auditory memory is bad.
 :(Have had sleeping problems for 2 years minimum.

As many statistics I hear about cancer studies, science sure doesn't know **** about a lot of things!
And people are afraid of the ramifications of Universal Medicine -- we already have a ton of problems with the current system!

[Pembo]

Hi Rebecca...Sorry to hear of your frustrations with the medical system. I've had mine as well. I'm not in GA but I hope you can find some skilled and kind drs very soon. In general I think the good docs are hiding!!!

I think I would opt for a closed mri with contrast....just start over as you said.

And if your mom can help you find skilled medical professionals, call her. My guess is she'll be more upset that you kept this from her. 

Good luck to you and I hope you get answers soon. The worst part is the unknown........

[Denisex2boys]

Hi there .... so sorry that you have to be here

Just to let you know - - I was supposed to get an MRI with contrast - but they didn't - the Tech. explained to me that they were taking such thin slices that it would be hard not to detect an AN - I am sure having contrast is much better - but they did findm y 1.5 cm 'puppy' without it.......

Good luck at your appointment!

[Soundy]

Reecca...
As far as side and symptoms... I had the left side of my face go numb after a bad migraine
spell... fearing possible stoke MRI was done and nothing was found on the left side but the AN
was found on right side...found accidently

[Jim Scott]

Hi, Rebecca:

You certainly are having a lot of stress right now and much of it is unnecessarily caused by insensitive doctors and the health care system.  Well, at least the tongue surgery (biopsy?) went well.   

I don't believe that telling your mother about having an MRI scan would be so bad.  She might be able to help.  However, if she worries a lot, as you mentioned, then I can understand your hesitancy about informing her of your symptoms - and having the MRI.  That will have to be your decision, as you know her best.  I think that an MRI, the closed version, probably, needs the gadolinium (dye) to highlight what may be a relatively small AN tumor.  You wouldn't want to waste any more time, money or effort and come up with a useless scan.

You're going to have to schedule another MRI to ever find what - if anything - may be causing your symptoms, which do sound a lot like AN symptoms, but who knows?  To my knowledge, an acoustic neuroma tumor affects the side it is on (right or left), but I could be mistaken.  I'm not a doctor and I certainly don't pretend to know everything about AN tumors.  That's why we have this website: for information.

No one will argue that the health care system can be a minefield but that most of us fear that a 'universal' system could be much worse.  Anything run by bureaucrats usually is.  Good intentions don't always make for good medicine.  That doctors, for all their learning, don't always know that much, is obvious to those of us who've gone through medical problems over time.  Some physicians are great and have an excellent 'bedside manner'.  Others are borderline inept and treat patients like cattle.   We've seen it all.

Rebecca, I trust that your MRI can be re-done the right way - soon - and that you can eventually share your concerns with your mom.  I also hope that either you do not have an acoustic neuroma tumor - or, if you do, that it's a very small one.  I prefer the latter. 

Jim

[Rebecca - arkofhope]

Well i took things into my own hands. I drove to a closed MRI place that had done my Mammogram. I talked with the front desk person and scheduled a scan Tues. at 8am - hopefully the first one.  I am also going to talk to the MRI tech Monday at noon to let him know I hate doing closed MRI's and make sure that he/she is "good" for lack of a better word.

 >:(I had a closed mri scan in Marin County, CA many years ago and they literally treated me like a conveyor belt customer. Never want to be treated like that again.

Anyway, thanks for all the kind words and thoughts.  It only takes this place max 2 days for results (other place 7 days), so I'm gonna wait and tell my parents when I know WHAT to tell them.

[Captain Deb]

My last MRI--they had headphones and some Jimmy Buffett--laying there listening to him sing "why don't we get drunk and sc....." I was just cracking up the whole time. Just pretend you're laying on your favorite beach!

Best of luck,

Capt Deb