Doc appt scheduled (some test results)

[JodieK]

Well guys,
I missed my Ent appointment due to a nasty cold/flu virus that my daughter gave me. With all the pain I was in, I couldnt get out of bed to drive the 1 1/2 hour trek, and I couldnt find someone to drive me, so I  had to reschedule. They couldn't get me in until October, but my PCP's nurse had called me again later Thursday and wanted me to come see him early next week. I am scheduled for an early morning Tuesday report. She again mentioned to me that the tests that I had in 2002 ( when I first got sick) were NOT normal, and that I did not need to delay things. Though I was aggravated, I said nothing. I, have not been delaying ANYTHING. I was told those tests were NORMAL and let it go at that. On a whim, I started going through some of my tests and blood results. I have "most" of everything.  Keep in mind while having this testing done, I was in a state of a six month long vertigo attack that just did not seem to want to end, back in 2002.

And, I found most of my reports. Had my new PCP NOT actually read this, I would have just kept doing what I did do for years on end- tossing them aside. Reading those ENT reports, and vestibular testing makes NO sense if you cant read half the charts. But it was what I read in between the lines and the same thing that tipped my PCP off to an AN.

I had caloric testing done just two months after getting sick.
The caloric testing reporting:
The results are ESSENTIALLY normal bilateral. There is a unilateral 10 percent deficit on the right side, but otherwise, this test is normal. There is also a 2 percent deficit gaze to the right. The OVERALL test was marked "normal" on the front page sheet.


The rotational chair device ( gee what a fun test THAT was) was all normal except for
- A high VVOR gain is noted. Clinical followup and futher testing is required. I received no further testing, and again the front *page* sheet listed the overall rotational chair device as normal.

In October of 2002 ... (I know nothing about hearing)... and at 26 years old
My hearing was 55 db in the Left and Right, equal bilaterally.

In December of 2002, just two months later,
My hearing was down to 44 db, in both ears, equal bilaterally, But this one included a speech discrimination test. It showed 88 percent in the right ear and 97 percent in the left. I have no clue what that means, but I can see why my doctor , who looked at me and my five year long hike of RIGHT ear pain, RIGHT ear fullness, RIGHT facial pain, and RIGHT sided headaches, would pull out ALL of my results and start looking at the RIGHT sided problems. By the way, I was told EACH and every one of these tests were  normal. Eh, you have a 10 percent difference.... who cares, must have been their thinking. I also noted on a neurology report that states "patient has a walking deviation to the LEFT". Wouldnt that mean something is wrong with the RIGHT?

Anyways, I looked back through all my scans and checked again everything real good.
In 2002, I had a Ct scan WITHOUT contrast of the head and sinuses. They picked up ALOT of problems with the sinuses- ON THE RIGHT, something about ostometal units, low turbinates, low riding cribiform plate, pneunomization, etc. After antibiotics, another CT without contrast was performed, and except for the remaining structural problems, the rest was gone.

And, I found my one and only MRI Report. It was an MRi of the brain done in 2002.  At the top it said  evaluation of dizziness and right sided ear pain.
It was done WITHOUT contrast and the bottom line was an "essentiallY' normal brain MRI.

At the WEEEE bottom of the report, it said "if patients symptoms continue, suggest an MRi with contrast or an IAC exam". Neither one of those were performed. Ever. I was given klonopin and told I had an atypical migraine. Ya think? I had a migraine for five months straight. I could have saved the money and told the doc HIMSELF that I had an atypical migraine.  Until I found this board, I never knew what IAC meant.I remember looking that up YEARS ago, but never seeming to find anything.

Are there really cases of MRI's of the brain WITHOUT contrast that miss AN's? I havent had one done since 2002, and I got sick then. So until I see my doc, I am hoping and praying that he has enough knowledge to order one WITH contrast, and not wait for the October appt with the ENT. In the meantime, he has the record from the hearing and balance center where I failed the ABR testing and was once again, told it was normal. I did note when going through my med records from the hearing and balance center that my name kept switching from Jodie K to Julie K. I HOPE AND PRAY that there really isnt a Julie K out there and they messed up our med records.

But anyways, did anyone have a normal MRi w/o contrast to later find an AN of one with? I cannot have CT's with contrast, as I am allergic big time to iodine.

Jodie K.

[Dana]

Jodie -
I don't have answers to many of your questions, but I'm pretty sure, almost positive, that there are those on the board who had an MRI without contrast that didn't show an AN, but then had another MRI with contrast that did show an AN.

About the problems on left versus right, it seems from everything I've read that the nerves we're talking about here - the auditory, vestibular, facial ones - control the function on the SAME side.  It's the brain itself that tends to control things on the opposite side of the body.  In the case of balance, the nerve on the other side CAN compensate, but not the hearing nerve.  And I don't know about facial because I haven't had to deal with that problem, so I haven't read much about it.

The only other things I'd say is make as sure as you can that your next MRI is a CONTRAST MRI.  BTW, one thing that confused me when I saw my MRI films is that they're "backwards" -- my AN looks like it's on the left side, but it's actually on the right.

Hope this helps a little.  Take care.  Keep us posted.  I'm sure others will chime in with more info.
Dana

[JodieK]

Hi Dana,

Thank you for your reply. It is funny that you mention that balance and hearing like that, because one thing that happened to me is that IF I am still having a balance issue, the other side compensated. I believe I am still having balance issues, just not the vertigo. Does that make sense? Its just that when I walk, I feel out of it- disoriented, spacey, its hard to put a finger on what I feel. When I first got sick, if you had looked at me and asked what was wrong, I would have said "The WORLD IS SPINNING", but now I just cannot describe it. I just feel very off. Sitting down, I feel very off. Stores are the WORST. It feels like my eyes aren't moving with my brain or something and it makes me very anxious. I do better in my house, because I pretty much know where everything is. I hope that makes sense.

But the hearing part for me, that never picked up. I just compensated for the loss ( not literally, but just by using my  left ear instead) . I started putting the phone in my left ear. I don't know when. I am right handed. And, if you say something to me, and I cannot hear you, I will turn my left ear outward and say "what?" I also noticed a long time ago that if it is loud outside ( lawnmowers, etc), I will lay on my left ear and put my right up. It does help to drown things out. But, yesterday, I noticed that my phone was ringing. Its a phone that LIGHTS up when it rings. I only saw it light up but could NOT hear it ring until I put it to my left ear. That was a scary moment and I hope that doesn't keep happening.

I read written medical reports that I had in 2002, and they all pretty much said the same thing. They were doctors notes from me seeing my doc. Most of them read:
1.) Patient complains of dizziness, right ear fullness, tinnitus and "brain fog"
2.) Patient reports she is losing her hearing in her right ear. It feels full.

But, to make a long story short, TODAY if you would ask me if I can hear, I would probably just say "I don't know. I just put the phone to my left ear". I figured that since my right ear feels FULL, that must be why I cannot hear out of it.    Its been rather scary for me as well to look back on five years of medical records and note that each and every time I seen a doctor or even went to the Er, the same symptoms were present "dizzyness, tinnitus, loud pitched squealing in right ear, right ear fullness, right ear pain, etc.".

I will just have to wait and see what an MRI with contrast says.   

I do have one more odd question. If you stick your finger in the ear on your AN side ( i do this from time to time to try to get the "fullness" out), do you hear thumping or a butterfly flapping its wings sound? I get that, but only when I stick something in my ear. I know, I should refrain from sticking things in my ear. 

[Dana]

Jodie,

Before I forget, two things from your original post:  One is that you shouldn't be afraid of getting a prescription for vicodin, unless there's some other med or condition that contradicts taking vicodin.  Research shows that IF YOU'RE IN PAIN, vicodin for the most part will not become addictive.  Don't just reject vicodin because others get hooked on it; like I said, vicodin is pretty much NOT addictive if you're in pain.

Also, I think you mentioned an incorrect name being on one of your scans or reports - Julie K?  I'd check that out.  Your birth date is usually also listed, along with your name.  Might as well make sure that that particular report is YOURS!

I definitely understand the unexplainable sense of imbalance.  I'm just "off", sort of bounce off walls sometimes.  My solution so far has been to pay 100% attention to steps I'm taking, moves I'm making ... hey, a rap song!  Since I'm older (58), having broken an ankle several years ago, and having a bruised heel bone that takes FOREVER to heel, it's pretty easy for me to always remember to focus 100% on my movement, since my legs usually have one ache or another.

I've had the swooshing, thumping and that butterfly sound in AN ear.  For me, it's when I'm laying down with AN ear toward the pillow.  It usually goes away if I slightly readjust my head.  I trust you'll get another auditory test along with a contrast MRI.  I've had two auditory tests since the first one that showed I'd lost hearing in right (AN) ear:  at the ENT's office before he prescribed a contrast MRI, and at the Univ of Wash. otolaryngology clinic before I met with the AN team of doctors there.  I had switched to using my left ear only for the phone about a year ago.  (And my balance has been off for 5+ years.)

As others have said, the most important thing now is to get a contrast MRI and find out if you have an AN.  If  you do, next step should be, I think, making appt(s) with teams who have lots of experience with acoustic neuromas.   Hopefully, teams that, between the doctors, do several different kinds of procedures/surgeries;  that way, you can have some confidence that they're not steering you one way or another just because "that's what they do."  I don't say this super-cynically; it's just human nature.  There are some clinics, like the House Ear Institute in Los Angeles, that will give you a consultation if you mail them your MRI results.  BTW, you can usually get a CD (for free or a minimal charge, like $12) of all films from your MRI.  It includes on the CD the software that allows you or any other doctor to review your films on the computer.  I think that because your situation has been prolonged and you have lots of severe symptoms and it seems somewhat complex (to me),  you should seriously consider getting topnotch feedback, like from the docs at House.  There are many other topnotch teams around the country; where are you located?  Do a search on this forum using a major urban area near you, so you can begin to research where you might want to go after your MRI, if it shows an AN.  If I were you, I'd emphasize the severity of your o..n..g..o..i..n..g symptoms, to get an appt sooner rather than later.  You must be really sick of living with all the symptoms.

Take care.  Write if you think of any other questions..... I don't have lots of answers because I've been lucky with minimal symptoms, but there are lots of good people with LOTS of experience here.

Ciao,
Dana