New with questions

[Ren]

In the beginning of 2007, I was a few months pregnant with my son and I had sudden hearing loss, tinnitus, and horrible vertigo. I was referred to an ENT. I had a hearing test done which said my hearing in my right ear was severely diminished (high frequency). He seemed shocked to find that it happened that quickly. My balance was checked and was very, very off. That didn't surprise me since I've always been pretty clumsy. He wanted me to get an MRI right away. He also wanted me to be on steroids, but I couldn't because I was pregnant. The MRI was done, but with no contrast, because there was a risk to the baby. It came back clear. After that the doctor didn't know what was wrong. He diagnosed me with labyrinthitis and BPPV and sent me home to do some vestibular rehabilitation exercises on my own. He told me that my hearing may come back in 9 months and to come back then.

You can see where this is going. My hearing hasn't come back and the ringing comes and goes. The rehabilitation helped me function in every day life, but I am still constantly dizzy, especially if I lean right. I lost my insurance after my son was born, so I haven't been back to a doctor. I am in nursing school (I was when I was diagnosed, too) and this is making things pretty difficult. As of a few weeks ago, my tongue and nose keep going numb and it is worrying me, too.

My question is - do I need a second opinion? From what I've been reading, the contrast is needed to see something that small. I just wonder why the ENT would send me to get an MRI without it.

[kimbo]

Ren

Welcome. 

I am new to this site diagonosed Aug 08 (read signature).  I am not in a position to advise you as I don't have the experience like others on the forum, however; you have answered your own question with your doubt.  You are concerned you might have an AN and from all the information I have read, an MRI with contrast will confirm an AN diagnosis.  For your own peace of mind and your family, if you went back to your Dr and asked for furhter testing or sought another opinion, you will know either way and you can move forward.  You are already worried and I believe you will continue to worry until you know.  The forum is a place of support and the forum will support you through your concerns.

Kimbo.

[joebloggs]

Hi Ren,

I'm also new, hurrah!  I would definitely get a second opinion/second MRI with contrast.  It could be something completely unrelated, or not, but better to know oui?  I can tell you that two years ago my hearing dropped off significantly in my right ear.  In May this year, overnight the right side of my face went numb (as did the right side of my body, but that's a weird thing where a cyst inside the AN grew suddenly and hit the brain stem causing the numbness to the body - or so they think!!  The body numbness only lasted a week).  Face is still numb, inside the ear, inside my mouth, inside my nose - all over the right side.  I had an MRI in June with contrast, finally got the results recently and I have a 2.4cm acoustic neuroma/vestibular schwannoma which is starting to press into my brain stem.  It's not small and it's not large, but my neurotologist likes to call it "significant".  So time to deal.

I saw the MRI they did before they injected me with the contrast and you can hardly see anything, so the contrast is needed to see something.

I hope this hasn't scared you, you may not have an AN at all - but it's better to find out hey?  I can tell you that I lost SO much hair between May and my diagnosis just from the worry of not knowing - I feel a lot more calm now and relieved in a way that I know what's going on and that there's a way forward.

All the best Ren, hope to hear from you soon, there are lots of people here who can help you whatever happens.

Joe

[msmaggie]

Hi Ren,

I am also fairly new, planning on scheduling surgery for December.  You do need to get this checked out.  Your symptoms are similar to what others w/AN have experienced, but you won't know for sure until you get an MRI w/the dye contrast.  This is a good place to ask a lot of questions!  You will get lots of help and support.  Go back to your doctor and see if he can help you, and if he isn't williing to explore it, find another dr.

Good luck and let us know how you are.

Maggie

[mindyandy]

Hi Ren 
My story is similar to yours. I was 5 months pregnant and my right ear began to feel like an earache coming on. Fullness, achy, tinnitus, etc. I went to the drs and he didnt see anything and sent me to the ENT. Since I was pregnant and due soon they waited for the MRI.
Well after I gave birth I went to have my MRI....and there it was....1.4x.9 AN on right side....
That over 1 year ago. I had CK done this past January. My next MRI is January....
Please do keep in touch and let us know either way.

[leapyrtwins]

Hi, Ren -

I'm not new 

I'm not a doctor either, but IMO you should get an MRI with gadolinium contrast.  It's the only definitive way to rule out - or confirm - an acoustic neuroma.

Jan

[EJTampa]

Hi Ren, and welcome to the group!
 
I am also pretty new, and haven't had treatment yet.  My AN was discovered with the gadolinium contrast, so yes, you should try to have that done.  I know it can be hard to get treatment when you don't have insurance, but maybe if you stopped by an emergency room of a larger hospital and told them what symptoms you are having, they will take you in.  You didn't mention where you are from (I don't think), but many states/counties offer insurance to those who cannot afford health care, if that is the boat you are in.
 
Either way, you should try to find a way to get the new MRI done.  My symptoms were diminished hearing in the right ear (high tones missing) and constant tinnitus.  AN's are not cancerous, and are rarely fatal, but left unchecked, they can grow and cause more significant problems down the road.
 
Ernie

[Ren]

Thanks guys! That's basically what I wanted to know - if the contrast was needed. I kind of figured that the ENT wasted my time and the insurance company's money to get an MRI. I probably won't go see this particular doctor again.

I told my husband about my fear of it being an AN, but he treats me like a hypochondriac. I'll keep on reading and learning. Thanks again.

[joebloggs]

Glad we could help Ren - good luck with the next MRI when you have it.  Don't worry about the whole hypochondriac thing.  I looked up my symptoms online while I was waiting for my big "this is what's going on with you" appointment with my ENT and every page that came up after I googled them was to do with Acoustic Neuromas.  When I read it I was a bit shocked and I remember saying to my partner, holy cow (or words to that effect!) I really hope I don't have that, that's like....a brain tumour!!! Eek.  There's nothing wrong with me (obviously apart from the hearing loss and numbness!) and I'm a healthy 31-year-old!  The partner said "don't be ridiculous, you're being a drama queen, of course you won't have that!"  And here I am.  So yeah, it's not something any of us would have expected or anticipated - it's pretty scary to start with before you know that it can be treated etc etc, but it's definitely worth figuring out what the deal is with you.

Good luck!

[wendysig]

Ren,
First of all, welcome to our group.  You will get the support here that your husband is not ready to give you.  My husband is the ultimate control freak and realized that this was not something he could control and quietly freaked out, but distanced himself unintentionally.  That was an emotional burden I didn't need.  Right now, you have to consider yourself the most important person in your life.  Your baby needs you, but you also need to be able to function so put yourself first.  Hopefully you have other emotional support and someone who can help you with the baby.  Do get another MRI with contrast -- as Jan said, that will rule in or rule out an AN.  DON"T let your husband make you feel like a hypochondriac.  We are here to support you however we can, so if you can't talk to him, please talk to us.  This group lof wonderful people supported me emotionally when I needed them most and all of us will support you

Best wishes,
Wendy.

[calimama]

I did not have contrast with any of my 3 MRIs. I did have for CT scans though (before and after surgery, and then at 2months post op). My AN was VERY visible on the MRI scans (but the tumor was not small, so maybe this helped).

I would get a second opinion if i was you... your symtoms sound typical of AN, and that you had a flair up while pregs is also suspicious.

[ppearl214]

Hi Ren and welcome. I'm wicked old


..... and have to agree with the others. To confirm an acoustic neuroma (mass), MRI with constrast will give the best view.  Sending wishes of wellness and hoping it's not an AN but something completely simple to fix.

hang in there!
Phyl

[arkansasfarmgirl]

I was just told yesterday that pregnancy seems to accelerate the growth of ANs.  My initial symptoms showed up when I was pregnant with my first.  And then right after I had my 2nd, things got bad enough that I finally went to the dr.  I was also told yesterday that the "drain" from my head is all but closed off and I need to get this thing out asap, before I end up with hydrocephalus.  Scary!!  My daughter is 10 weeks old, and I was initially diagnosed 4 weeks ago with a Large tumor.  The waiting is hard.

We're trying to get past insurance issues ourselves right now.  But my husband told me, "it doesn't matter, and I'll take on another job or 2 if I have to and if we have to live in this crappy little house forever, that's alright because you'll be alive and here with me."  You can imagine how I've been stressing about putting us in the poor house.  LOL  I'm hoping my insurance will come through this week and we can go on and set a date and have it paid for.  The most important thing for me right now is I have to get fixed so I can raise my kids.  Money problems are nothing compared to that...

Vonda

[Kaybo]

Ren~
Welcome...even though I wish you weren't here, you will find GREAT support here.  I think that whomever suggested the ER was really on target - I know 1 of the hospitals here HAS to treat you no matter what.  I think that when you mention all of your symptoms, maybe the ER doc would pick up on the need for an MRI w/ contrast.  Dufreyne...where are you?  What do you think??
You will be in my prayers, Ren.

K

[Rivergirl]

Ren, Sorry you are faced with this, I do sympathize with the partner thing making you feel like a hypochondriac.  I always seem to have stuff and my husband doesn't let me get carried away but dam it sometimes I just need to.   I try not to tell him how I feel that is why I love this site, I feel so normal here. Best of luck.