D Day!!!!!!!!!!!!!! MRI TODAY

[Suu]

G'day again Ray

Cold or hot weather has no bearing on how I feel except that I seem to sweat (more ladylike term is perspire ) more while doing things so sometimes need a fan on me. Unsure if it's related to post-op or if it's just me getting older.

Suu

[crv1200]

Well I have hot flashes but that is another subject LOL



Ray

[cindyj]

Hi, Ray...my mom lives in Easley and I'm just down the road a bit, north of Atl.  Perhaps we can meet up sometime.  I will send you a PM (private message) to give you my contact info and/or, my info is on the Willing to Talk list. 

Know it's hard having to wait so long for the MRI and wondering if every new tingle is related to a possbile AN...I will continue to hope that it is not...

Best to you,

Cindy

[crv1200]

Thanks Cindy I got your info.  Right now I am having a hard time dealing with the roar in my ear.   It is worse today than it was yesterday, sounds like it did after driving so much.   It's bothering more and more at night also.   I am trying so hard to hold on until the DR. appt on Tuesday.   My family and friends keep telling me I shouldn't wait but go to the ER and right now I have bills always I can't pay and have no insurance.  I am not sure what to do.  The Hospital is paying for my MRI not sure what else though.   

Ray

[crv1200]

I just woke up from a nap and the noise in my ear has increased once again,, 3rd time in 2 weeks,
this time though the roar/hum is much louder but there is a high pitched sound on top of that and then of course I have the ringing which has been there so long I can't remember life without it.
this is OH MY GOD!!!!!!!!!!!!!!!!!  I now can't hear much out of this ear because of the noise in it which I know by the ENT that it's the other way around, hearing loss is causing the noise in my ear.   I don't think I will be able to sleep tonight.  My appt with the ENT is tomorrow 3/27 at 1:15 pm and I am going to beg him to try and find a way of getting the MRI before April 25th.   Pray people if you pray


Ray

[crv1200]

I wanted to let everyone know how the Dr's visit went today The hearing test today confirmed that my hearing loss is much worse in the last month. I am at 50% loss in my left ear now. The Dr said that goes right along with all the things I was telling him. He said that was a BIG red flag. He is more concerned now DUH!!!!!!!!!!! They are going to try and see if they can get the MRI moved up.  He put me back on Steroid pills just because he wants to be doing something to try and HOPE that it will help me with the symptoms while we wait for the MRI and he put me on an extra Fluid pill a day, plus Valium for the balance issues/dizziness at times. Never heard of Valium being given for balance issues but the Pharmacist said it is true. So basically he tried to not let me see how concerned he was but I saw it in his face before he said anything when he looked at the hearing test results. Statistics are low that it could be a tumor BUT he said now I am MORE concerned. He also tries to keep me from worrying too much. It's not like he can come out and say OH you have a tumor because he don't know. I think he got scared because he had stopped any kind of treatment waiting for the MRI and things are going down hill too fast so now he can say well we did all we could. Dr's!!!!!!!!!! So that's story.

[BeckyMax]

I'm so sorry that you have to wait so long for the MRI, I don't understand this at all.You are dealing with alot and I'm glad that you are able to come here where others are going through similar problems.  Keep us posted, you are in my prayers.

Becky

[crv1200]

Thanks Becky!  Because I have to go under general anesthesia for the MRI they say is the reason it's like scheduling a surgery.  I had a panic attack trying to take it even an open MRI a few weeks ago.  But now the Dr is going to try and push for an earlier date because he feels we need get it done ASAP.   I am happy I've found this site and forum too.  Thanks for the prayers!

Ray

[crv1200]

My ear kept waking me up all night and when I got up this morning the hum/roaring sound in my ear is much louder and I can bearly hear anything out my ear now.  It was 50% loss Tuesday at the ENT.   SHOULD I CALL THE DR'S AFTER HRS NUMBER?  GO TO THE ER? WHAT?  The Dr's office is trying to get the MRI moved up from April 25th but they have not hear back as of Friday.   When I was in the office the other day he said he didn't know what would happen if I had went to the ER but now I am really scared.  Any advise?

Ray

[Lou]

Poor you, it is so hard to stay strong and focus on the impending MRI. I would suggested waiting for the MRI, if you go to the ER and update them with your current situation they would want to wait for your scheduled MRI as well. The good news is, if it is indeed AN you do have time, honestly. If you think of all of the tumours you could have, this is definitely not the worse. That's the way I look at it.
stay strong and keep venting, if that is what helps you. I was addicted to this site when I was first diagnosed with two facial nerve neuromas, it did help. it still helps. I am going for my first 6 month follow up MRI on 30th April and I am so apprehensive but I also know that even if there is growth, I have time to consider the best treatment option
Remember we are all just a keystroke away

[crv1200]

Thanks Lou!  I does help to come here.  I hope everything is good for your 6 month MRI.   I finally called the on call ENT tonight and he of course is not my DR but he was very rude to me and said some things I didn't like and my DR wouldn't have said like.. "there is nothing we can do for the noise in your ear, ER is a wasted trip, you have nerve damage you will not recover the hearing you have lost etc"   My DR has tried to be gentle in not wanting me to give up, the on call also said "oh the MRI is not going to help you only looking for an Acoustic Neuroma so you will have to learn to live with the loud noise"  I am like oh my GOD!  I know what the MRI is for and hopefully we can find out what the cause of the issue is and try and do something about NOT that I just have to live with my ear like this the rest of my life, I mean noise makes you want to chop your head off.   Would be different if you just didn't have any hearing and no noise there (WHICH BY THE WAY I DON'T WANT TO LOSE ALL MY HEARING) but it seems so hopeless right now and the lack of concern really is overwhelming.  He said that I should go in to see my DR on Monday and tell them the on call DR said for me to come in so they can put me 1st, but I hope it eases off some before then because I think it would be a wasted trip too.   I am praying for relief in my symptoms all the way round and some peace.   

Thanks for the response Lou!
Ray

[Suu]

Hi Ray
My doctors in Australia are wonderful and say that I can phone them anytime I have a query.  I usually come here to search for symptoms before I do that though.  It's rather calming knowing that others are going through the same things.

If you play a radio quietly (I actually boom out Greenday) when the noise is loud it can take your mind off it.  Even a fan or watch a TV show.  While I type here I can barely hear the huge noise that rings in my AN side ear but I just stopped for a minute and there it is. 

I had my inner ear as well as my eardrum taken out completely and it's worse than ever so in answer to that part of your question - not necessarily does the sound go away.  Sorry.

Please update us on your visit.

Cheers,
Suu xxoo

[crv1200]

Suujoy,
   Wow looks like you've been through a lot!  Well at this point trying to get the TV or Radio,Music to a level that does not hurt my ear is a challenge.  I sleep with a fan on so that helps but I take drugs to get to sleep.  I've been dealing with the ringing in my ears since a child so if was just that and not the loud roar/hum on top of it I would be ok.   I do everything I can to try and keep my mind off of it but yesterday it was so loud it sounded like my ear was going to explode.   So since you had the inner and ear drum taken out and you still have the noise that means it is coming from the brain.  I read something about that and there is supposed to be a new treatment but I can't remember what they call it.   6 months of the loud and louder and louder roar/hum just really got to me yesterday and I kinda lost it LOL.   Not knowing is very hard too.  I just wonder how many people are able to work with all these things going on?  I've been unemployed since April 2010 due to being laid off except for a temp job I did for a few months.   But if my condition continues to get worse and more hearing loss I am not sure I could work.
Thanks again for the comments

Ray

[crv1200]

The MRI date has been moved up to next week on April 11th.  My follow up with the DR to go over the results is the next week on the 18th.  Praise God they had a cancellation and we could move it up.   My noise in the ear has improved since Sat so I've gotten a LITTLE relief.  Not sure why but I'll take it.


Ray

[Suu]

G'day again Ray
That is awsome news about getting your MRI moved up!  I'll be here waiting for the outcome.

I find that the noise in my ear isn't as noticable if I don't concentrate on it.  I try very hard to keep busy.
At night is my worst time.  If I'm half sitting up in bed or if I'm laying a certain way, I get a buzzing like there's a bee in my ear!  My doc keeps assuring me that it's the nerve endings that cause it and seeing he's the one with the certificates I will let him have it his way LOL

When the buzzing or ringing gets so bad that I want to stick a pillow inside my head I take a valium to calm down.

I didn't think I'd get used it but knowing why it's happening helps and trying to take my mind off it is the other thing that helps.

I have a layman's point of view on tinnitus - why can't they tie the nerve off    I'm going to ask that question on my next visit so watch this space. 

Hugs as always,
Suu xxoo