ANA Discussion Forum
General Category => Inquiries => Topic started by: nini on April 17, 2011, 02:06:21 pm
-
Hello Everyone,
I hope you'll are fine. I'm very new to this forum and I'm very happy such a forum exists. I'm scheduled for an MRI tomorrow and I'm very anxious about it. I just want to talk to some of you so that I don't faint tomorrow when I hear the result. The truth is I've had hearing loss and a constant tinnitus for the past 6 years. My ABR was negative so I was told just go and have fun! Now after about 4 years of that time my doctor said you are probably a classic case of AN. I'm a little bit angry at myself because I didn't ask for an MRI myself and didn't do the research I had too. I was just too busy with life. Now I'm afraid after these 6 years the tumor has become so big that I can't have surgery without complications. I just don't want half of my face to be paralysed. I know I should be stronger but I'm just so lonely. I'm actually much more afraid that the tumor is a Hemangioma and non-operable. I know death comes for everyone and I know I have to accept it but I'm just not that ready and strong yet. I appreciate your support :)
-
Nini -
I can totally understand your feelings, but take a step back and breathe deeply. You are getting ahead of yourself.
Until you know for certain what your MRI results are, you may be worrying needlessly. Even if your MRI does show an AN, it may be small enough that radiation is an option as well as surgery. Sometimes large ANs cause small symptoms and sometimes small ANs cause big symptoms. In addition, tinnitus doesn't guarantee an AN - lots of people who have tinnitus don't have ANs and there are some of us who had ANs but not tinnitus. Hearing loss can also be caused by many things other than an AN.
I hope that your MRI tomorrow will be "clean", but if you do happen to have an AN, we are all here for you and we'll get you through this.
Please keep us updated.
Prays,
Jan
-
Thank you so much Jan for your support. The thing is I'm trying to get ready. Actually I have more symptoms that just hearing loss or tinnitus. My ear pops out when I speak which I think is pretty much specific for AN (Ear Pressure). It really gives me hope that you are doing well. I hope my result is not worse than AN. :)
Best of luck to you,
-
nini .....
Should have looked at this first ...... I posted a reply to you on the other thread.
Many thoughts and prayers for peace and calm for you today and tomorrow.
Clarice
-
Thank you so much Clarice for answering. I read the other forum( I shouldn't have posted in the other forum sorry). I feel much better from yesterday:) I couldn't believe I'd get so much support here :) Knowing you all are doing so well gives me so much hope for tomorrow. About the contrast I don't know what to so. My friend's husband is conducting a research on Gadolinium and he told me today ask not to have it! He said probably (since they aren't done) it wouldn't leave the body for many years and has lots of side effects. He is a pharmacologist so he wouldn't care what the result of your MRI is! And the doctors most probably don't care what the side effects are. In the morning I decided not to have it with contrast. Now that I'm reading more about the cases that haven't been shown without the contrast I don't know what to do. I think I'd do whatever the radiologist recommends.
-
Nini, All I can say say is that I have been having MRI's for 10 yrs now with no side efrects that I know of. If one really checks any drug or IV dye can have side effects for someone with long range bad results. One does have to watch if they have kidney disease and any more there are some labs which are checked ahead esp if one has kidney issues or is older or diabetic for the gadolinium to be given. So the decision is up to you and your dr. Cheryl R
-
Thank you Cheryl for your reply. Actually I'm not in a situation to decide I think. I'd do whatever I'm told. I'm glad you are not experiencing any side effects. I don't have any of the problems mentioned so at least I think I wouldn't have any problem in the near future. I'm sure about the long term effects. My most important problem right now is having a heart attack when I hear the result :(. (Just kidding)
-
Nini -
gadolinium can be a problem - in large doses or if you have kidney problems.
These days most hospitals/docs make the patient have blood tests (BUN & creatinine) before MRIs with gadolinium to look for kidney problems.
Check with your doctor.
Jan
-
Jan,
I wasn't asked to have any blood test. The doctor only asked me if I'm taking any medications and that was it. I don't think I have any kidney problems though. I even don't know if my MRI is contrasted or not. At that time I really didn't know anything about the dye to ask about it. To be honest I'm more concerned with the results and from reading the posts on this forum I think I really need a contrasted MRI.
-
Nini,
Thinking of you as you have your MRI and hoping it is NOT an AN, but if it IS, we are here for you.
Many people are convinced they have an AN and practically have a surgeon lined up, only to find out that that is not the case.
So just stay busy until you find out the results. My AN was slow and sneaky over who knows how many years, so yes I had some facial nerve complications, but life is good :) and I have movement to the paralyzed side from my surgery last May.
Keep posting. It is good therapy to vent your feelings, frustrations, fears. We ALL can understand!
Maureen
-
Thanks Maureen :). I have my MRI in several hours and I'm dying. I'd definitely keep you posted.
-
I just got my MRI. My results would be ready tomorrow but the radiologist said he didn't find any abnormality. :) I'm really happy. The first 20 minutes was without contrast and then they injected the dye and the next 10 minutes or so was with contrast. I don't think there is a possibility that he has missed a small tumor since I have the symptoms for 6 years.
I wish you all do well. I was just not as strong as you all to go through all this.
Thank you Maureen, Jan, Cheryl, Clarice :-* for supporting me. I felt so bad yesterday.
Now I should wait and see what forum I have to join. ???
-
Nini -
glad you got through your MRI, and while I'm glad you don't have an AN, I wish you had some idea of what is causing your symptoms.
You are more than welcome to keep joining us here; AN or not.
Best,
Jan
-
Jan,
To be honest I don't have any idea what's the problem. The first doctor told me I have meniere's by only seeing my hearing test. He even didn't ask for an ABR. I didn't feel any dizziness and it wasn't like I had attacks , I just had constant high pitch tinnitus. My own family doctor said the is a problem with your eustachian tube. The third one Got the ABR and since it was negative said it is probably because of stress. ??? I'm a very stressed out person. I'm just tired of hearing the tinnitus. I don't even care if I don't hear with my left ear but this tinnitus is just killing me. I can't concentrate, I'm always tired. My symptoms are exactly like what people discuss on the forum. I just don't have the balance problem or facial weakness. The other thing is when I want to clean my ears I feel pain but only when touching it with a swap.
I'm clueless at this point. I'm going to see my doctor tomorrow. I'm sure he is clueless too.
Thanks,
-
Nini,
A relief for you to know you don't have a bugger growing in your brain, but yes the big question is what is causing your symptoms?????? ???
I can totally understand the pain of tinnitus. Sometimes it is so loud, it almost hurts. I'm listening to "white noise" app on my cell phone right now with an earbun. The sound of soothing rain is trying to minimize the high pitch squeal on the AN side....it actually helps :)
Maureen
-
I really don't know Maureen:(. What I guess is there is something in my middle ear or my thympatic membrane(although the doctor said there isn't) . I have pain when I touch my ear like it has a lesion and my ear pops out when I talk at loud.
The problem is I always listen to something(music , tv, radio... ) not to hear my tinnitus. It's really hard studying this way. I don't really know what's my disease. The thing is I've had it for 6 years. ???
-
Hi Nini,
You are not alone! In January, I had sudden hearing loss in one ear, roaring tinnitus and many other symptoms (head tingling and tremors, head aches, aural fullness and occasional ear pain, and feeling of imbalance when walking down stairs) - I have had 2 MRI's - with contrast and one MRA. so far, nothing has come up to show the cause. Like you, I am so bothered by the tinnitus. I think it is actually causing my head tingling and tremors. I am sure the worry about what all of the other symptoms are caused by are making the tinnitus harder to deal with. My sleep is horrible - as I wake up several times a night from the noise in my ears. I am going for a 3rd opinion on Friday and bringing the MRI disc with me. This doctor plans on looking at the actual film - unlike many of the other doctors I have seen, who only looked at the report. Anyhow, I totally understand your anxiety. I recently started a new job - and it is so hard to interact naturally with my coworkers while hearing all of these strange sounds in my head, and struggling to hear conversation at the same time. I hope you will take comfort in knowing that I understand what you are experiencing. Please keep us posted on how things turn out. It may be that we both have an atypical form of Meniere's Disease (without the disequilibrium/dizzies). Best wishes and sending prayers your way...
-
So I just visited my doctor. He said the good news is you don't have AN. Then I asked him so what is it and he said he doesn't know and that he suggested I use hearing aid!!!!!!!!!!!!!! >:( I tried one and it didn't have any effect on my hearing or tinnitus.
I have pain in my ear for God's sake when I touch it!! My doctor didn't really care at all. I don't really know what to do.
I mean it can't just be nothing !!
@Bluebird I wish you find out what's the problem. I got my MRI CD and I have to show it to some other doctors probably. The hearing is not a big deal I'd say but the tinnitus is just so hard to bear sometimes. I thought I might be able to get rid of it . Anyways I'm already living with it for 6 years.
-
There are many hearing aids that I have been told can really make a difference with the tinnitus. Maybe you could ask the doctor to refer you to a good audiologist who can help you find the right hearing aid. For many people, (the right) hearing aids provide a relief from the tinnitus. I am sorry about the pain you are experiencing in your ear. It has to be scary. It seems like pain should not be one of the symptoms of losing your hearing... I am planning on trying hearing aids next year when I have budgeted for them and my hearing loss is not fluctuating anymore. Good luck.
-
Hi Nini, I am sorry I am just joining this thread, but I am relieved to hear you don't have AN. Although now you have to deal with the frustration of trying to figure out exactly what is going on with your ear, maybe a second opinion is in order. Or a third... Either way, it sounds like this doctor isn't getting you the answers you need, so try someone else, if you can. Take care and good luck with all this!
Jay
-
Count your blessings...not having an AN is HUGE. I know having tinnitus is not fun...most of us here have it, and it drives some people crazy, and some of us just live with it. I know that it is driving you crazy, but you will have to live with it, until you get the right help. My father was having a lot of pain he could not deal with, and he went to a pain clinic where they taught him some mental techniques that helped him deal with the pain. There was not any medical treatment. You might look for a neurologist that can help you. There is no cure for tinnitus, but there some help out there for you...you just have to find it. Hang in there!
James
-
nini .....
Not sure this is helpful or not ..... we had an audiologist come speak at our last WV ANA Support Group meeting, specifically on the topic of tinnitus. Two things I learned .....
1) silence always makes tinnitus worse. Therefore she was recommending an under the pillow speaker for a sound machine with a choice of sounds, like ocean waves, rippling water, white noise, music, etc. ..... whatever works for you so that the brain has something to work on besides trying to fill in its own noise (tinnitus). This is also why your doctor recommended a hearing aid. My tinnitus is much less when I wear my hearing aid ...... even though it does not give me back normal hearing.
2) look for an ear clinic in your area that have trained audiologists in neuromonics. Not everyone can be helped with it, but the audiologist said some people have great results with it.
Your ear pain is a separate issue from the tinnitus so two treatments are most likely indicated. Have you had your ear canal checked for any infection or fluid behind the ear drum? (Remember, I am not a doctor so you should definitely seek medical treatment for the ear pain.)
Many hopes and prayers that you will find relief soon!
Clarice
-
I love you all and although I don't belong here anymore I love to keep in touch with you :-* I just can't impress how relieved I became after getting so many replies.
@ Jay I'm really sorry for the news. I hope with all the great caring people and with the wealth of information on this forum you can get back your health. I'd definitely get second opinions as you suggested.
@ Bluebird Actually there was an audiologist in his clinic that talked to me and even let me try the hearing aid(I don't know what's its name). It didn't help that much with the hearing and as I understand it just helps you neglect the tinnitus with adding some noise. He told me honestly that it wouldn't help that much. The tinnitus is sometimes unbearable but I'm Ok with the pain.
@ James: I do count my blessings really. I'm blessed and relieved. I can surely understand your pain. I can't explain how I felt under the MRI machine. I have to be grateful and not nag about tinnitus while you all are going through all the pain. Tinnitus in nothing comparable.
@ Clarice: I'm sure there is something wrong with my ear. Is there any way they can look through your ear? I've never checked it for infection or fluid. No doctor ever said anything about a method by which you can check through the ear. Thanks a lot again for all the support and I wish you maintain your health.
-
nini .....
An ENT doctor can see your eardrum by looking in your ear canal. He/she can tell if it is red, glistening, bulging, etc. what additional problems you may be having with your ear ..... plus, of course, other testing procedures could be indicated. You should definitely pursue finding out what is causing your pain.
Best wishes and let us know what you do find out.
Clarice
-
Dear Clarice,
My eardrum was checked that way. I mean he looked into my ear but he didn't find anything...
-
Hello Nini,
I just read this thread today and I hope you have been able to get some help with everything that has been going on with you. I have severe tinnitus 24/7 and loud noises can definately cause pain. I'm glad to hear that you do not have an AN, though I will be praying that you soon will find out what is wrong and hope that you can find a doctor that won't misinform you and scare you! When the radiology people found my large AN ...they pulled me into an office and told me I had to have someone pick me up. I asked why because I had to get to work! They told me all this scarey stuff that could happen! My ENT called and told them to let me go. ;D So yes, get 2nd, 3rd and 4th opinions if needed. And as others have said...AN or not, come here and we will help as much as we can. Keep us posted.
God Bless,
Laura Lynn