Question on Symptoms

[Paul2]

I just found your forum and have a question.  My ENT doctor is suspicious that I could have an acoustic neuroma based on my symptoms.  He has suggested doing an MRI.  My question is if a person has this type of tumor, will the symptoms start and stop?  What I mean is can you have vertigo, tinnitus, ear fullness and sound sensitivity a few days, then the symptoms stop, and then start up again?  My wife and I were thinking if you have a tumor, you would constantly have the symptoms.  I am very claustrophobic so I do not want to do an MRI unless it is absolutely necessary.

Thank you for any information you can share with me.

Paul

[Dana]

Paul,
Glad you found our forum - it's a good place to ask questions and alleviate concerns.  That said, I can only give you my experience and "guess" as to your answer, which is -- yes, I think symptoms can come and go.  I KNOW the vertigo/balance issues can come and go because our bodies can compensate.  About the hearing and tinnitus symptoms, I know that my PERCEPTION of their severity changes alot, so I'd say, yes, they can waver also.  For instance, when I went for followup 6 months after GammaKnife treatment, I said my hearing was worse, but hearing tests (done at same facility) showed no change from previously.

About the claustrophobia - I hear you.  I am only a little claustrophobic, so I was able to grit my teeth and get through it.  My second MRI was the morning of the GammaKnife treatment and they had me pleasantly "looped" on intravenous who-knows-what drugs that I didn't even notice having an MRI, although I was awake.  The third time I got a prescription for Valium.  So...if I were you, I'd really emphasize your extreme claustrophobia (don't be afraid to exaggerate a little) and hopefully they could give you some strong medicine.

If your ENT is correct, it is probably best to get the MRI.  Have you read much on this site?  Acoustic neuromas (vestibula schwannomas) are almost always very slow growing, so there's usually no big rush.  And then there are several options on what to do, including "wait and watch," if you do have an AN.

You might want to wander around this site to see if you think your symptoms sound to YOU like an AN.  And perhaps get a second opinion from another doctor. 

Keep asking us questions.  This is a wonderful group of smart, investigative and supportive folks.
Take care,
Dana

[lori67]

Hi Paul, and welcome!

As you'll see if you poke around any of the posts here, nothing about AN's is "typical".  We all seem to have varying symptoms and to varying degrees.  It seems to do with where exactly the tumor is and what it happens to be pressing on at the time.

My only symptom prior to diagnosis was numbness on half of my face - it felt like novacaine wearing off after a dentist visit.  It was worse some days than others - sometimes I really noticed it, and other days it seemed like it was going away.  I have heard of people who have had tinnitus that came and went also.  So, basically, anything is possible with these things.

There are also people here who have a difficult time with MRI's and are able to tolerate them with some medication that helps to calm them down.  I'm sure your doctor can help you out with that.  Unfortunately, the only way to accurately diagnose an AN is an MRI with contrast.  Make sure you tell your doctor about your concerns - I'm sure you can come up with a plan that works.  You're certainly not the first claustrophobic person to need an MRI.  

Good luck to you - and I will keep my fingers crossed that things go well for you.

Lori

[Debbi]

HI Paul-

Just wanted to comment on the MRI - I, too, am horribly claustrophic (can't breathe, full blown panic attack at the thought of being in a small space.)  When my ENT requested that I get an MRI, the only thing I was worried about was surviving the MRI.  I explained my fear to the ENT and he prescribed Xanax (1 mg, I think) to take an hour before the MRI - it worked like a charm.  Just make sure you have a driver, though, as you won't be able to drive for several hours.

I am scheduled for my first follow up MRI in Sept and this time, the neurosurgeon presecribed valium - same effect as xanax.  \

Even though claustrophobia may feel "silly", it is very real.  Don't let it stop you from getting a firm diagnosis, though - if you do have an AN, the sooner you find out, the more options you will have. 

One other thing, my husband was able to stay in the MRI room with me, and he held my leg (don't laugh) the entire time - that also helped.

Debbi, terrified of tight spaces...and not afraid to admit it!

[Paul2]

Thank you for your replies!  I thought I would share a little more information.  My symptoms started in 2002 with roaring in the right ear, fullness, vertigo and some hearing loss.  The doctor said it was inflammation and prescribed prednisone.  But over the years, the symptoms have become worse.  My doctor sent me to a neurologist for the vertigo and balance problems in 2004.  The neurologist did an MRI with contrast of the head (which I sweated through!!).  The neurologist had no answer for my symptoms.  Last week I went to an ENT who was the first one to bring up the possibility of the AN.  I contacted the hospital who did the MRI in 2004 and asked wouldn't it show a tumor if it was there?  Their answer was only if it was a large one, as they did not focus on the ears.  I keep asking my wife "why didn't they also focus on the ears when the did the MRI in 2004?" and driving her crazy about it!  Since 2004, my family doctor has told me all my ear symptoms are caused by sinus and allergy problems so I have been trying numerous allergy and sinus meds, and yet continue to have the symptoms.  I've even had to take a tranquilizer because of the stress over the ear symptoms.

I appreciate hearing from everyone!

Paul

[Dana]

Paul,
Yes, unfortunately, as far as I know, they have to know what they're looking for when they do an MRI so they can focus on that area.  BUT you should still seek out your old MRI and have someone look at it.  You have the right to access to your own medical tests.

BTW, the MRI does need to be done "with contrast" to show an AN.

Sounds to me like you really should get another MRI.  We were all told "acoustic neuromas are rare"  (a year ago I was told one on 100,000), but HERE WE ALL ARE!!  Your symptoms are long-lived and disturbing your life; get it checked out.

There are many doctors who don't have much awareness of ANs, so it's not surprising that no one thought of it before.

Do keep us posted.
Hugs,
Dana

[Kaybo]

Paul~
I would definitely say that the symptoms can come and go.  I told my hubby when we started dating that I would sometimes get food on my face & not know it and to please tell me - that was when the tumor was resting on the 7th(facial) nerve.

Ask for drugs for the MRI - it'll make all OK!   

K

[lholl36233]

Hi Paul,

The only symptons I had were tinnitus, ear fullness and hearing loss.  After a course of high dose prednisone, I feel the ear fullness and hearing have improved.  The tinnitus persists.

After two MRIs and a CT, I'm waiting for my next appointment with the surgeon to get the results of the second MRI and first CT on 7/11.  Based on the first MRI, he couldn't be sure the growth wasn't just an inflammation until he sees the CT.

Good Luck,

Laura

[Jan D]

Paul - I had the same experience with Dr's thinking that all "ear problems are caused by sinus or allergy problems."  I can tell you from experience that they only say this because they don't want to pursue it further or they don't want to admit that they don't know what's wrong with you.

Yes, the AN's are usually slow growing, but in my case, it started growing at a rapid pace and I wasted valuable time getting treated for "allergy or sinus".  I highly recommend the MRI (with sedation, such as Valium) and getting a second opinion soon.

Best wishes,
Jan D

[lori67]

Paul,

I was treated for sinus problems and headaches for 15 years. Remarkably, since I had my surgery, I haven't had a single headache for sinus problem.  Hmmmm...I think maybe it wasn't my sinuses all those years, don't you?     Not to say that your symptoms are definitely caused by an AN, but many of us have been misdiagnosed in the past so it's not unheard of.

Don't worry, I'm sure your wife doesn't mind you driving her crazy!  That's what spouses are for, right?   

Lori

[MaryBKAriz]

Hi Paul,

I had full ear feelings, hearing loss (word recognition in particular), LOUD ringing and dizziness. It varied and still does. My AN was diagnosed in March and 3 weeks ago had Cyberknife treatment.

I am VERY claustrophobic!!!!! I have had 2 MRI's WITH contrast and a CT scan. I did one MRI without sedation and it was difficult even though it was supposedly an "open" MRI. The next one was really tight, but I had "happy" pills. It was a lot easier. There was a mirror in there to see out, which I was thankful for. I addition, it is softly lit and has a nice refreshing breeze. It is a bit noisy, but I did't care much.  You can talk to them and they can talk to you. Believe me, if I made it through, anyone can! Just tell them you will need something for claustrophobia. There are a lot of us out there. They have heard that many times before. My specialist and the MRI people asked if I was claustrophobic even before I told them.

If you do have this, you did find a good site!

Best of luck to you and please keep us posted.

Take care,

Mary 

[Paul2]

Hello to all of you!  This is Paul's wife, Lynne.  I want to thank you for helping him with the questions he has asked.  It is wonderful to have a group of people like you who will share their experience.  I do want to say that "NO" he is not driving me crazy!  He has really been having a hard time with these symptoms and trying to get someone to figure out what is going on.  One thing he didn't mention was that he is real sensitive to sound.  For instance, if we are at a place where there are a lot of people talking, it really bothers his ears.  Is sound sensitivity a symptom of AN?

Thanks for being so supportive to my husband.  We both appreciate the information.

Lynne

[Omaschwannoma]

Lynne and Paul,

The sensitivity to sound is all too common and I had this too, and more symptoms that I care to remember and ALL were poo poo'd for 12 years as anxiety, sinus, old age (40's), age-related hearing loss, fibromyalgia, too much yeast in my system, etc.--sigh!  I remember in 1991 I had a "red flag" moment where I didn't recognize my surroundings and my doctor suspected a brain tumor so ordered MRI but without contrast.  Had it been with contrast I believe it would've been there, albeit very small.  Many of us have the same story of how it took YEARS to diagnose, the frustration, sometimes humiliation, the patient goes through knowing there really is something wrong, but no one is getting it!  I'll never forget the day I was told it was a brain tumor and how relieved I was!!!!!  No one wants a brain tumor, but all the years of being told "it's nothing" and turns out to be "something" can be an odd comfort.  At least NOW we know what IT is. 

I hope for your husbands sake the MRI shows nada, but that wouldn't help him feel better, but at least you can cross off the worst case scenario and move on to other possibilities as there can be many causes for his symptoms.  Hang in there, go for the MRI, close your eyes and don't even think about it. 

[MaryBKAriz]

Hi Paul and Lynn,

Some sounds drive me CRAZY! I can't stand some music I used to love, especially live music. :-( One thing to see, out of curiosity if your hearing is garbled in your bad ear when listening on a cell phone. That is common with ANs. I have had to switch ears due to the distortion of the sound. Numerous noises don't sound "right".

Mary 

[Debbi]

Hi Paul and Lynn-

It is apparently common to get "hypersensitivity" in your stronger ear (or in the case of us SSD folk, in our only hearing hear.)  Certain noises and pitches can be quite uncomfortable and even painful.  Again, not an uncommon symptom for someone with an AN.  This particular sensitivity happened gradually to me, coinciding with gradual hearing loss due to the AN.  Now, being SSD, I still have some hypersensitivity, but it seems to be getting better - or maybe I'm just adjusting!   

Debbi