Update on the MRI Mix Up

Last year is now a form of the yesterday.

This year is now a form of tomorrow.

And with this new tomorrow, delivers answers that yesterday couldn’t provide.

Deep, right?

:)

Seriously, with the new year, comes new answers. The short version is that I do have Enlarged Vestibular Aqueduct Syndrome (EVAS) as confirmed by the CT Scan. If you have absolutely no idea what I am talking about, a nimble little summarization of my last post:

None of the medical quacks I have seen in the past have managed to figure out exactly WHY I am the way I am - deaf and the only one in the family too.

Fast forward to twenty-four years later, my cochlear implant surgeon discovers that I have an Enlarged Vestibular Aqueduct on the CT scan or MRI film. Uncertain which one he had used to diagnose EVAS but I was happier than a pig in poop that I had an answer. In my eyes or ears, depending on what orifice you want to use, it was the golden grail of my deafness. My surgeon kept the CT scan films because that is what he is going as a guide to implant my other ear and sends me home with the MRI films.

Seven hours later around eight o'clock at night, I was sitting in my favorite chair with my dog asleep at my heels dreaming of the freshly baked carob chip cookies and peanut butter barkcuits, I just happen to be nosing around in the envelope containing the MRI films and discovered that most of the films don’t belong to me.

In my appalled state, my findings immediately tainted the doctor’s diagnosis because I was unsure what films he used – the CT scans or the MRI films. My dog woke up at this point.

Before my eyes glazed over in premenstrual madness, I could see that the information on the MRI films gave me the name of the facility, the patients name, date of birth and the date the tests were done. Very convenient. The date matched the date that I had my tests done. So, the radiology facility that I had the tests done at had given me the wrong MRI films!.

I've been quite the busy little bionic bee trying to get to the bottom of this but because of the holidays, it has been a slow crawl. Note to you all, just in the case where you feel the desire to go snooping around around your medical files, do it during normal business hours. It will save you much grief. But with just a couple of emails, I could confirm that my surgeon used the CT scan films to determine that I have EVAS. Whew! To alleviate any doubt, I had them double check to verify that all my CT scans belong to me.

This brings me to shifting my focus on the facility where I had my CT scan and MRI done. I shall return the MRI films that do NOT belong to me but I just want the radiology facility to provide me with a copy of my MRI films which they are giving me a little issue. I’m in duel mode right now for that. I want them to reread my films because this mix up has created a little thundercloud of doubt about the authenticity of the MRI report.

In the grand scheme of whole medical screw up, it was most likely a very honest mistake that I ended up with someone elses MRI films. It happens and no one got hurt, thankfully. Logically, I would have liked SOMEONE to have caught this instead of me discovering it over a year and half later.

But back to the fact that I have an answer which is all I ever wanted. My mother always had it in the back of her mind that maybe it was the antibiotics she took when she was pregnant with me when she had pneumonia. Ototoxicity is a real issue, so it was plausible. My father always had it in the back of his mind that maybe the piece of meat I swiped off the counter that caused E. coli that could have caused it. I had a high fever with that, so that could have killed my hearing. I always wondered which one of my many childhood illnesses that I had could have caused it. I mean I was anemic, I had blood transfusions, I had my tonsils ripped out along with my adenoids. I was a sniveling mess of a child with a very lengthy hearing history.

It is a huge relief to know it was something that I was born with and it was inevitable that I would become profoundly deaf. It was all me and it was meant to be.

Finally, an Answer to Why I'm Deaf or a Total Medical Screw Up!?

I took a trip out to University of Pennsylvania Hospital today with my CT Scan and MRI results in tow to start the process to have my right ear implanted. My right ear was a candidate last year but I still have to go through the whole process again minus all the tests. I don't have to redo the CT Scan, MRI or the balance tests. I don't need to have any audiological testing done because it's not as though my ears have gotten better :) In fact, my right ear, the one I wear a hearing aid in has finally gone kaput. I might as well should put it to good use! I am still a candidate and I don't have a surgery date yet because there is an issue with my oh-so-wonderful-union-backed-health-insurance canceling the contract with the hospital and they want to assure they get approval so I am not stuck with a hundred twenty-thousand dollar bill. And quite frankly, I want assurance that I am not going to get stuck with a hundred twenty-thousand dollar bill too. But that is another blog entirely.

When I saw the doctor, he came in and sat on the chair. He leaned back and crossed his legs, interlocked his fingers and rested them gingerly on his lap while he gave me the best present that I could have asked for: the answer to the age-old question of why I am deaf since no one seems to know why I have a hearing loss since I am the only one on both sides of the family that is deaf.

"Abbie, you have what is called Enlarged Vestibular Aqueduct." He says.

"En-larged Ves-ti-bul-ar Aq-ue-duct." I repeated after him, syllable by syllable.

I presumed to steam roll him with questions. With the recent advancement of MRI technology, it has made it much easier to diagnosis this. A CT Scan can appear normal but with an MRI you can actually see the enlarged duct and sac. He explained to me that I was born with it. Most children that are born with this don't lose their hearing until three or four years old since this is when the Vestibular Aqueduct reaches its normal adult size. Figures, I would have something enlarged in my ears. My ass is enlarged. My chest is enlarged. So why not my something in my ears! The second I left, I was determined to become a self proclaimed expert via the way of the Blackberry of this Enlarged Vestibular Aqueduct Syndrome. And everything that I have read so far, fits perfectly. From the reason I feel as if I have fluid in my ears after I get my head jarred to the sudden deafness to the progressive hearing loss and how the one side worse than the other. It fits. This will be a separate blog too. I know, I know, what is the point of this blog you ask? Just hold on to your candy canes, I'm getting there.

My answer to my deafness has long be undetermined but I finally have an answer or so I thought.
 
Since I was stuck in traffic for a greater part of the day, I spent much of my time on my blackberry reading about this Enlarged Vestibular Aqueduct Syndrome. This shouldn't surprise you because when I get interested something, I research it to the death. But anyway, I finally got home from finishing up some Christmas shopping. I decided in all my professional incapacity to take a look at my MRI results. I never took a look at them before so I figured why the heck not!

I cracked open the huge Manila envelope and as I removed the MRI sheets as if they were made of glass. There was a ton of them! I carefully pick one up and hold one up to the light and started to admire each of the images on the film. I couldn't help but think they look like a very boring black and white Andy Warhol painting. They were arranged four across and five down: 20 images total on a single sheet of film. Like this:



I had no idea what I was looking at but I just so happened to take notice of a name at the upper right corner of each tile - a Wayne Something. Note: I changed the name to respect this person privacy.

First I thought it was the name of the person who performed the test or the name of the radiologists but I read further: Pat.: Wayne Something born in 1952.

Ok. That means patient.
 
I picked up another sheet of film. Wayne Something.
 
I picked up another one and sure enough, Wayne Something again!
 
And another one, Wayne Something.

I'm sensing a pattern here.

Yet another sheet, WAYNE SOMETHING

Picked up another sheet and saw a familiar name, MINE!

All in all, a total of four sheets belong to me.
 
All twenty other sheets belonged to Wayne Something born in 1952!
 
Ok.  I thought maybe the hospital might have incidentally given me back someone else films but I checked out the date that Wayne Something born in 1952 had his MRI done. It matched the same date that I had mine done. 

I’m attempting to think logically here because I am so frigging furious and I am pms'ing and all the dark chocolate in the world isn't calming me down. The answer that my entire family and I have all been waiting for was just handed to me on a silver platter and NOW, the possibility that the diagnosis was based on WaynE Something born in 1952 films and not my four friggen MRI films.

DO I LOOK LIKE A FIFTY YEAR OLD MAN TO ANY OF YOU?!

No, I didn't think so either. My so-called logical thinking has lead me to conclude that when I went to pick up my MRI films, they gave me Wayne's films and I never had a full set of MRI films to begin with.
 
What is really upsetting me is what if the doctor based his diagnosis of having Enlarged Vestibular Aqueduct Syndrome on HIS sheets and over looked the name?

That means I am back to square one without an answer to why I am deaf.

The hell I'm going back to square one without a fight. First thing tomorrow morning, I'm calling the MRI place, calmly, and tell them what happened and politely request (demand) that I get my full copy of my MRI results.  I am sincerely hoping that they still have a copy of my MRI films because this is dating as back to early 2007. I will request the radiologist to measure the size of my vestibular aqueducts to see whether the doctor diagnosis is correct.

I practically screamed my friends ear off on the phone tonight reciting this entire SCREW UP to her and I decided it was time to give her a word in edgewise because I puffed out all the oxygen in my lungs. First thing she does, is her worst impression of Barry White singing,

"Happy Holidays!"

Stay tuned folks and have a great holiday! :)