Tiny AN(?), Big Problems

[ZigZagGal]

I am a newbie.  I don't even know if I have an AN, but really need to vent and get some validation that I'm not nuts (or confirmation that I am!).  I'll try to be succinct.  Started feeling dizzy/off balance in mid August.  Had something similar 9 years ago - constant feeling of slow rotation.  MRI at that time showed nothing unusual.  Everything else (BPPV, etc.) ruled out.  It faded away in about 6 months.  This time, it is stronger.  I have to hang on to the wall a lot.   I also have screeching tinnitus, a "full" feeling ear, and on/off pain.  I have a mild high frequency loss in both ears (from a concert in college).   I think it is harder to understand people, but a recent pure tone test shows no change. 
Had an MRI with and without contrast on 9/26.  My PCP told me I had "inflamation in the inner ear" and I needed to take Meclizine, wait it out to see if it goes away.  If not, then I should go to PT and have another MRI.  I wanted to know more, so ordered a copy of the MRI report.   It says there is a "1.5 mm focus of contrast enhancement present".  It was also seen on the the "thin section axial T2 section as well" and is "consistent with a tiny right intracanalicular vestibular schwannoma" .  It also says "due to its small size localized inflammation could be considered as well." 
Well the drug didn't help.  I signed up for PT and have been doing the eye exercises, which haven't helped yet.  Went to an ENT, who ordered a VNG which showed "decreased calorics on the right and clear nystagmus on lateral gaze".  The ENT was noncommittal about what these mean.  Now I have an appointment at Mayo clinic on 11/14. 
I'm really hoping for some answers on what this is, and what we can do about it.  I am almost embarrassed to be so upset about such a tiny little blip, but it is really playing havoc with my life.  It is very difficult to work and drive and get around.  I am a speech-language pathologist, so really need my hearing for my job. 
If it is an AN, I am afraid that I will be told to wait and see.  I really don't want to wait until I lose my hearing.  Any suggestions on what I need to ask? 
Am I too impatient about the exercises not working yet (1 month)? 

[Brendalu]

Tracie,

I think you are correct in getting a second opinion.  I don't understand medical jargon so I can't help there, but I do know that if it concerns you and is causing problems, something needs to be done to ease your discomfort and concern.  Please keep us informed what Mayo has to say about this "blip" that is causing havoc with your balance.  My balance was out of wack for about ten years.  People just thought it was because I am short!  My hearing was perfect.  Then I started falling and getting hurt.  My ear started feeling that fullness thing. (It still does)  I also still have no balance!  Plus my perfect hearing is gone, but I had it for ten years longer than some people, so I guess I am luckier than some.
Good luck and let me know how you make out.

Brenda

[mindyandy]

I too have been off balance for years. I have never fallen but have run into many walls. I just found out this past Sept that I have a 1.4cm on my right side. I am having CK done here within a month and hopefully it will save my hearing. There are no guarentees (spelling LOL) with anything...surgery or radiation. If you take care of it early (if it is AN) then the outcome should be fine. Yes get a second opinion and research your options. I have buzzing in my ear sometimes I can hardly notice and sometimes it really bothers me. Please keep us informed. You will find that everybody on this board is very caring and are always willing to listen. Even when you just want to vent...

[hendi51]

Tracey my husband also has a small tumor, 7X5 mm, but also has big problems. Everthing he sees bounces up and down due to nystagmaus, balance is bad, he staggers like a drunk man, has lost 82% of hearing in left ear and is having numbness in left side of head, not just his face. Sometimes he has a throbbing pain behind left ear. He wants the tumor out but surgery is not an option due to heart problems so he will be having Gamma Knife Radiation. We see the Neurosurgeon Nov. 20 and should find out when on that date. I don't think it's all about the size of the tumor but the location. Hope you get answer to all your questions soon.

[coloradokidd]

My son's tumor is very small 6mm ,yet causing a lot of hearing loss in his left ear. We were told it really depends on the positioning of the tumor. (we had three opinions) .He is going in for translab December 3rd. Keep being persistent and your answer will come.

[sgerrard]

 It says there is a "1.5 mm focus of contrast enhancement present".  It was also seen on the the "thin section axial T2 section as well" and is "consistent with a tiny right intracanalicular vestibular schwannoma" .  It also says "due to its small size localized inflammation could be considered as well." 

Various doctors have told me that the radiologist who read my MRI is highly regarded. He used similar language on my MRI report, so I would read "consistent with a tiny right intracanalicular vestibular schwannoma" as meaning "yup, you've got a 1.5 mm AN". If the drug didn't help, and the radiologist used the phrase "consistent with", that makes it seem pretty likely. Obviously, though, you must rely on radiologists and otologists to make the final determination.

1.5 mm really is tiny, and I bet you are right, if it is an AN, they will suggest watch and wait. In fact it might be too small to treat very easily, since it such a small target, although I bet the Cyberknife people would be willing to try and zap it. It is certainly the case that even a very small lesion can stir up all sorts of symptoms, if it happens to be in just the right place, as yours seems to be.

It is possible that with the PT, you can you retrain your brain to ignore the right side, and only use the left side for balance. This is what happens to many AN patients, sometimes gradually over a period of time, so they hardly notice it happening. Radiation is not as good at fixing balance problems, since it doesn't remove the damaged balance nerve the way surgery does.

The AN, if it is one, will not necessarily affect your hearing right away. You might go several years without experiencing any hearing loss. Each AN is different - mine hit the hearing, but didn't affect the balance at all. You might very well want to watch and wait, if you can manage to adjust to the balance issue.

Hopefully the Mayo Clinic will be able to provide you with some more definitive answers about what is going on, and what your options are to deal with it. I hope something works out for you soon.

Steve

[ZigZagGal]

  Thank you to all who replied.  I so appreciate the information and feel less panicked about it all.  I will keep you posted.
Tracie

[Mark H]

My "twins" are arounf 2mm each. Other than tinnitus and a few balance problems they don't bother me too much. This year's MRI showed nosignificant change from last year's, so it looks like they're behaving nicely. I'll just keep an eye on them until or unless something changes. I do bounce off the occasional wall or table, and yup, I have fallen a few times. The legs just don't always seem to get the message to walk from my brain. 
Mark

[4cm in Pacific Northwest]

Tracy,

In this AN world there are speculators and crystal ball readers. I had my MRI examined by many specialists.

I would skip your vague ENT and send your MRI and audio report to a “neurotologist� specifically.

The world’s� best crystal ball MRI reader� in “the world� (in my opinion and that of others more qualified than me) is Dr. Derald Brackmann.

http://www.houseearclinic.com/brackmannDE.htm

In my case he made the most accurate guess of what it was in my head… and was proved right by my pathology report post surgery.

These are the flags I have with your symptoms (quoting you)
   constant feeling of slow rotation
   screeching tinnitus
   "full" feeling ear
   mild high frequency loss (both ears is more rare and usually only a NF2 symptom)
   consistent with a tiny right intracanalicular vestibular schwannoma"

You wrote
“Any suggestions on what I need to ask?"
I would recommend that you send copies of your MRI and audiogram to House Ear Institute with a covering letter to him. I personally recommend you start with Dr Brackmann… ( you may not do surgery specifically with him as you probably would have many other options being that it is small) but he will be able to tell you if indeed it is an AN or not. He could then help you locate the right surgeon (if not at HEI than with someone closer to your geographical location and in your network) People fly all over the world to see him- I did … and I specifically chose someone who trained with him.

Dr Brackmann has seen more AN tumors than anyone. He is now age 70 but very spry.

He is also a medical advisor to the ANA here.

I understand he will look at an MRI sent in the mail and will call you back.(Testomonies on this forum)

…That would be my suggestion.

I lived too many years with symptoms and clueless doctors until… This year I became more proactive and they found a whopping 4cm… and I actually had good hearing. I was left only  :(with surgical options. Be active while you still have other options. If it is not an AN tumor and something else like Meneier’s disease- he will know of who to connect you with.

Best of luck,


4

[chica07]

I had a small tumor ( 9mm ).  No hearing loss or fullness.  My major symptom was vertigo...I was spinning the whole time. Yes, you should send the MRI to a neurotologist to make sure you get a the right diagnosis. 

[lori67]

A tiny blip in just the right place can certainly be enough to cause havoc!  You have every right to be concerned about it!  My AN was a good size,  and I really had none of the symptoms that would have led anyone to believe anything was wrong.  Yet, others have a very small AN and have horrible symptoms.  I guess it all depends on where it decides to make itself comfortable.

Good luck on your quest for answers.  It definitely can get frustrating trying to get a straight answer sometimes, but keep asking until you do!
Keep us posted!
Lori

[Omaschwannoma]

It's been said before and let me be the one to remind us all, "Size doesn't matter!"  Wish the docs would pick up on this one! 

[ZigZagGal]

Got the "official" word at Mayo on the 14th that my tiny "blip" is ,indeed, an AN, and that my first bout of vertigo 9 years ago was probably due to that.   Dr. Driscoll was very thorough and unrushed in his discussion with me.  I was given loads of information about AN's and treatment options.  His recommendations are to "watch and "wait", push the PT for the vertigo, and repeat MRI in March/April.  So....I will be moving on over to the "watch and wait" forum.  I will be sending a copy of my MRI and tests to the House Clinic as well.  Thanks to everyone for all of your advice and support.  You are very inspiring to me!


Tracie 

[4cm in Pacific Northwest]

Tracie,

I wish it were different circumstances but welcome to the AN family – you will find lots of support here.

I did not become an ANA member until after my surgery.

https://secure.baxinternet.com/~anausa/membership_donate.html

Lots of great materials-  I think I should have read before I underwent treatment.

https://secure.baxinternet.com/~anausa/for_sale.html

You have lots of time to wait and watch… and you are handling this well and making good choices.

Good for you.

Keep moving forward…

4

[sgerrard]

Hi tracie, sorry to hear that, but at least now you know. I hope your PT goes well and reduces the symptoms, and that your next MRI shows no growth at all.

Post in "watch and wait" if you like, but feel free to post any where; most of us don't pay attention to the categories anyway. 

Steve