ANA Discussion Forum
General Category => Inquiries => Topic started by: Islander on June 19, 2009, 11:24:46 am
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Hi there,
My Tinnitus in both ears started about a week ago, It's generally low level that can usually be ignored. Occasionally it will flare up for different reasons. Being a big believer in catching things early I did some research online and decided to see an ENT. He sent me to an audiologist that tested my ears. Both ears hear in the normal range. My left ear showed a slight drop in hearing response compared to my right ear. My left ear was also slightly abnormal when it came to the middle ear test. So I did my follow up with the ENT today and he reccomended I get an MRI to rule out AN. I have no other obvious symptoms besides my Tinnitus. I was wondering what symptoms you all experienced if any, before getting diagnosis? Also, specifically if you thought you heard Tinnitus in both ears beforehand?
I was looking through the postings and just wanted to say that you guys all seem like a wonderful group. If nothing else this may help prepare me for the worst. Thanks for your time!
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Oh I did forget to mention that it seems like I've been popping my ears more often, from "airplane ears"...
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Greetings, Islander!
Let's just say, I certainly hope your MRI does not reveal an AN, but if it does we are here to be of any support we can be.
Each of us have had different pre-diagnoses experiences so it is difficult to know if you have an AN until you see the results of your MRI. Be sure it is ordered with contrast, as that is the most reliable way to determine an AN.
In my case, I had dis-orientation (balance) issues and 20% sudden hearing loss (via an audiogram) and that was all ..... virtually no tinnitus until post-surgery. Others have had headaches, facial numbness, etc.
Be sure to let us know what you find out.
Clarice
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Hi Islander and welcome.
Oh, I wish I had a dime for each time I've noted to folks not to "self diagnose" as it can be so dangerous... very stressful... and most of all... can be incorrect.
There are so many different reasons why hearing loss and tinnitus can occur... my mom perferated her eardrum as a child.. hence, her tinnitus and hearing loss...yet, as you found us... AN's can do it as well.
As you are having an MRI on Tuesday to rule out any AN or such, make sure they use "contrast" dye during the MRI since an AN will "light up" (show up) much clearer due to the constrast.
My hope is that you don't have an AN... and if you do, we are here. Let's hope your MRI shows "nothing" (take that in a good way) and just hang in there until the test is done.
Phyl
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Thank you both for your quick replies! I am trying to remain as calm as possible given the circumstances. It's nice to see that life does go on.
I did indicate "contrast" with the MRI for more accurate results, Good to know that is the better way to go. I will post back to let you know what I find out. Hope you both have a good Friday and a wonderful weekend!
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Hello,
Good for you in getting this checked out. My husband has been having symptoms for the past 6+ years - partial numbness of the lip and tongue. That was it He thought it was more of an annoyance than anything else and it never raised an alarm when he mentioned the symptoms to the doctor or dentist. He had also noticed a low grade hearing loss, but thought that was the result of lots of loud music and age. He finally had his hearing tested last month. That started the ball rolling and he was diagnosed with a large AN earlier this month.
I also hope that the MRI results are routine.
Miranda
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Thanks for the well wishes Miranda! I'm sorry to hear about your husband, unfortunately fear of the unknown keeps people from doing the right thing sometimes and I try to do my best to avoid that. From what I can tell so far this is a great place for information and support! I pray things go as well as possible for your husband!
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Hello Islander,
Welcome! You sound frazzled and I just want to tell you that is very common when you first start testing and/or receive a diagnosis.
I started having ringing in my ears 6 yrs ago and once in a while a little balance problem only when I got out of bed in the morning. I actually couldn't tell if the ringing was in one or both ears. It was probably a good month or so before I mentioned it to my doc during a visit for something else. He gave me an antiobiotic (I think) and when the ringing persisted, we scheduled an appt with an ENT. From there took a hearing test that showed a pattern of minor hearing loss consistent with an AN. I then proceeded to the MRI and rec'd my diagnosis. I, too, freaked - of course reading everything I could online and unfortunately many of the sites I viisted back then were telling the worse-case scenarios which was even scarier. This place is a Godsend for both information and positive support, so I'm glad you landed here!
Once I had my diagnosis - a small right side AN - I went and talked in depth to two different neurotologists. I also knew radiation was an option, but frankly, because of the pros and cons of ANY treatment, I decided (and both surgeons concurred) that I would just wait-and-see. ANs are typically slow growing, so, I thought, why jump into a procedure sooner than necessary? The panic I felt soon subsided and I became very comfortable with yearly MRIs and wait and see.
It was only this year - 6 yrs later - that my MRI showed a bit of growth. Along with that were balance issues that I had been noticing over the past couple of months. The docs now said I should probably consider making a decision - surg or radiation. Surgery is my choice because I was advised I would probably have a better chance at rehabbing my balance with surg than with radiation (and this was based on MY situation and symptoms ... not all folks with a certain size tumor have the same symptoms). I'm also doing traditional surgery. I recall reading about endoscopic 6 yrs back so I really can't comment about its success rate vs traditional. You might want to visit the House Clinic (in Calif) website, as they are definitely the "premier" go-to place for ANs. Many folks travel to be treated there, but many just use their resources as a guide to educating themselves.
I hope your MRI is negative for AN, but while I know how worried one can get during the early stages of diagnosis, I can assure you the anxiety will calm down (oh it comes and goes, of course, but to me the worst was right at the beginning when I first got the news).
Your ear-popping reminds me of one strange "noise" I hear in my ear every so often .... it sounds like a big metal spring has sprung ... like BOING inside my head. I've often wondered if anyone else heard anything similar.
Good luck to you, Islander. Hopefully, your MRI will come up clean as a whistle!
Jeepers
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Jeepers,
Thanks a bunch for the info. I really am frazzled today, I've had the day off work and i've been doing research online regarding Tinnitus and Acoustic Neuromas. From the little reading I've done, it seems like the endoscopic procedure at SBI in California would be the way to go if I did end up in that worst case scenario.
I'm not sure what type of audiogram showing a hearing loss between the ears is typical for AN. Looking at my data I didn't think that the difference between the two ears what that significant, but apparently my ENT thought otherwise... ditto for my middle ear exam data. I have noticed a touch of vertigo if I lean my head back and pop it up.. not sure if that is normal or not.
Have you given any thought to the type of procedure you would like to proceed with? Good luck with everything and keep us posted on how things go! :)
btw. what is your tinnitus like? does it vary during the day? do certain foods make it worse? Thanks again for your time!
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Now that you mention it I really can't tell if the ringing is coming from one ear or another. It almost seems like at different times one ear may be slightly louder than the other and vice versa. Of course when I plug both ears it sounds like it's coming from the center of my head...
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We hope you get good news from your MRI as it is a scary thought of what if it is a tumor. The forum may sound like one always ends up with terrible problems. One does not always realize that many who have surgery are here for a time and recover and go back to the normal life. There may be some adjustments for some but the loss of hearing on one side is can be adjusted too for most people easier than they think it would be. I had pretty much lost mine and didn't realize it.
There are several of us here in the midwest who have went to Univ of Iowa for surgery with good results.
Getting the info you need will come in time and we are able to help. Cheryl R
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I only notice the ringing gets worse when I'm very near a loud noise ... blowing my hair dry, mowing the lawn ... things like that.
I'm going with the translab approach and am on the calendar for July 9. I chose translab because it offers the best exposure to the tumor and no brain retraction. While I will definintely lose the hearing in that ear, that's ok with me, cause my hearing is only at 16% at this point anyway.
It's good you're doing your homework, but don't feel the need (nor is it possible) to make any decisions at this point. Only when the tumors are extremely large is there urgency to treat. If this does turn out to be an AN, you need to talk to at least a couple of neurotologists to let everything sink in and be sure of what you are hearing from them. Take someone with you if you can - as you may not remember all that's being told.
Try to calm down. It'll be ok. The different options and approaches will be explained to you - each one having it's pros and cons.
Cheryl's right ... "Getting the info you need will come in time and we are able to help."
:)
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Jeepers and Cheryl,
This forum and it's members have really been a godsend to me today. I appreciate all your info and feedback. I will post and let you guys know how it turns out :)
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Hi Islander!
I will be thinking of you on Tuesday and your MRI.
I hope you find out was is going on and pray it is not an AN.
But, if it is, we are here for you!
And, since ANs are slow growing, you have lots of time to research treatment options.
Please post your update on the results. Another great thing to do is to ask for a copy of the MRI - report and pictures.
The last one i had, they made a copy of the pictures on a CD right after i was finished, then sent me the written report after that.
This will be good to have if you decide to consult with other docs.
Sincerely,
Sue
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Hi Islander!
I'm glad to see that you are taking such a proactive approach on your health. My symptoms were ignored by my family doctors for at least 6 - 7 years and I was far too complacent for my own good. Looking back, I should have insisted that further testing be done - if I had been more "in control" of my own destiny, I think my AN would have been detected much earlier. BUT...everything turned out ok in the end and I was very well taken care of by the best surgeons, family, and friends.
I had only a very slight hearing loss prior to surgery. My noticeable and bothersome symptoms were around balance. Very unsteady gait, difficulty navigating at night, and those kinds of things.
My only caution to you is that there is a line you can cross with researching too much. If your MRI is scheduled, I might suggest that you rest up a bit on the research and see what you find out. Then let the results of that guide your path to a more targeted research. I ended up reading way too much and spent much needless energy worrying about things that were not necessary. BUT...believe me...I understand the need to find every shred of information possible!!!
Good luck to you and I sure hope you find that you don't' have an AN at all!!! If so, though, there is much support here and life is good!!
Kathy
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Hello, Islander (love the name!) and welcome! I was one of those "self-diagnosers" that Phyl mentioned above ;), turns out, I was right, but as she says, many turn out to not be AN's. To your question about tinnitus, I never could tell pre-surgery which ear it was in...it was just in my head. It took me 2 years to finally consult an ENT about it - I thought there was nothing that could be done about it. I was right about that part, but wrong to have waited so long to check it out...(Now, I can clearly "hear" that the tinnitus is on my AN side, or former An side, I guess :) )
Please let us know how things go with your MRI - if it's not an AN - great! If it is, we're here for you and your questions and concerns!
Cindy
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Sue, thanks for the great suggestions!
Kathy, You are right, I have come to a point in researching the matter where I know there is good help out there if the worst comes to pass- so I am done with the researching for now. I am now just waiting on Thursday - the follow up with my ENT after my MRI on Tue.
Cindy, yeah I've heard of too many people that wait too long to get things diagnosed when an earlier diagnosis may have improved their situation, so whenever possible I try to stay on top of it :) are you SSD at this point then?
Thank you guys for being so kind and supportive. It has definitely helped me get through this weekend! Will keep you posted on what I find out!
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Yes, I am now SSD - had nearly perfect hearing prior to surgery, but my doctor and I chose the Translab approach, which sacrifices the hearing nerve. No real problems adjusting...a bit weird at first, but it has given my husband many opportunities to tease me unmercifully ;)
Will be watching for your updates after your MRI,
Cindy
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Tuning in late here, but my pre diagnosis symptoms were a feeling of fullness and diminished hearing in my AN ear.
I never had tinnitus - still don't - and I had balance isssues I wasn't aware of until my MRI showed the AN and I went to my neurotologist who had me do some tests.
Good luck with the MRI on Tuesday.
Please keep us posted on the results.
Jan
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Islander,
Hang in there! It sounds like you have done a lot of research already. I agree with some of the others that you might want to take a break from the research till you get the results from the MRI. If it is an AN you will have lots of support! Everyone we have talked to on the forum moves on with happy and healthy lives.
My wife just had her surgery last Monday (6/15) for a tumor that was at least 3.6mm. It was a little harder to get to than they expected but everything turned out ok. She has some minor facial weakness but we expect that to come back. We went with Translab so she did lose hearing in one side. She seems ok with that and I think seems to be adjusting well.
You have a great support group here. They have a lot of information and really helped us a lot.
We are thinking of you and hope things go well with the MRI.
Bryan
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Hi Islander and welcome,
I really don't have much to offer at this point other than to welcome you to our group. I hope your MRI is clear and it turns out that you don't need to be here,but if you do you will find this a wonderful place to find information and support. Good luck today in your visit to the Tube of Gloom.
Best wishes,
Wendy
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Be off to the gloom tube in about twenty mins. My follow up isn't till Thursday so I won't really find out much today. I appreciate everyones well wishes and sentiment!
Bryan, I wish your wife a speedy recovery! Hope everyone is having a great day!
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Wow.. that MRI was *loud*.... got it with and without contrast. I also got a CD with the images and they will send me a report after my follow-up with the Dr. this Thursday. *fingers crossed*
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Islander .....
Now you know why we call it the TOD (tunnel of doom) ..... ::) Glad it is over and my fingers are crossed for a clear report for you.
Clarice
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Islander~
Chiming in late. Hope the MRI is clear, and if not, we are here for you.
You are on top of the game by listening to your symptoms and pursuing treatment.
I on the other hand ignored my symptoms for many many years (won't even go there).
>:( Live and learn.
There are a couple of people who come to mind who were so convinced they had an AN and were even thinking how they would seek treatment.
Then the MRI came back NEG! And they were like, "But why do I feel so bad???"
We're here for ya,
Maureen
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So I got my MRI results back and I feel very lucky that it is totally clean. The MRI results did show that I may be having some sinus issues possibly due to allergies so I got a steroidal nasal spray to try.
Needless to say I feel like a huge weight has been lifted from my shoulders as I was forcing myself to prepare for the worst. I have to say all of you'll really helped me through the last couple of days and I am *very* grateful for each of you taking the time to answer my questions!! I wish everyone here the best and it's nice to know there are support groups as great as you guys out there for those in need!
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Great news!
All that worry for nothing, but it is still important to keep tabs on those body symptoms.
We only have one body!
Best wishes,
Maureen
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WHEW! What a relief, Islander!!
That's such great news! Now [zoom] on to the fun parts of the internet ... ;) ;D
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Great news, Islander ;D
Congratulations!
Jan
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So glad to hear, Islander! We enjoyed meeting you...feel free to stay in touch with us!
Cindy
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Islander ....
So relieved for the clean MRI ...... and also glad you found this forum to give you some support in the pre-MRI anxiety phase.
Clarice
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I'm so happy you did not get the AN diagnosis. You were so smart to get it ruled out right away. Enjoyed reading your posts.
Grace
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So I got my MRI results back and I feel very lucky that it is totally clean. The MRI results did show that I may be having some sinus issues possibly due to allergies so I got a steroidal nasal spray to try.
I'm so pleased to learn that you received a clean MRI report! Congratulations - and thanks for your kind words. :)
Jim
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I haven't checked the forum in a few days since we just got back from the hospital (Pam is doing well).
I was so glad to hear that your MRI came back clean! Congratulations!
As the others said, keep listening to your body and take of yourself.
All the best,
Bryan and Pam