Tuesday, December 23, 2008

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.


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! :)


Danielle said...

omg!!! Im SO Sorry this has happened to you.. honestly u might want to always check you MRIS... EVERY PAPER U get!! This happened to me ur not the only one and i didnt notice until 2 months later!!!!!!!! After 15 hospitalzatin this yr they still cant figure what the hell is wrong with me and why im having " sudo seizures". I totally understand ur frustration hang in the there! Try and Enjoy your holiday.. I would SUGGEST u go down to the MRI PLACE friday and get them right then and there. The MRI place wanted to mail it and I SAID NO!!! Im coming down and they had it all ready.. and I checked each and every 1 of them!! SO I THINK U REALLY SHOULD GO DOWN THERE FRIDAY!!! THEY HAVE TO GIVE IT TO YOU. IM sure they will have it bc 2007 isnt to far away.

Good luck!!

Happy Holidays!!

-Danielle in NY

Anonymous said...

This is mind boggling! Well, in a ways, not really. Plenty of screw-ups have been known to happen. This serves as a reminder that we can't always rely on anyone but ourselves, sometimes.

Kim said...

ARRRRGGGGHHHH Can you hear us joining you in the scream?? How crazy that this was not noticed!! How sad that Wayne's films were shared with you - what happened to patient confidentiality - what happened to checking one's work twice?? What happened to making sure the correct information is being reviewed....

Pass the chocolate this way or I'll continue :)

Merry Christmas

Kim said...

ARRRRGGGGHHHH Can you hear us joining you in the scream?? How crazy that this was not noticed!! How sad that Wayne's films were shared with you - what happened to patient confidentiality - what happened to checking one's work twice?? What happened to making sure the correct information is being reviewed....

Pass the chocolate this way or I'll continue :)

Merry Christmas

Manda said...

Blimey! This is so not on! I hope you gave them a what for! although your post make me laugh! keep it up and let me know how you have managed to solve this. i too been told that I have the enlarge.. whatever you called it but I do not know what its mean and how is it possible to have them from both hearing family trees.

implant going well after a week since the switch on by the way! :)


Anonymous said...

What a bummer. I also have LVA and it doesn't really tell me much.

But the doc was really bad to get you mixed up - I would change docs immediately.

Did you tell him?

Hugs and merry Xmas - when are you coming for a hol in NZ?

Laurie said...

Oh my goodness, Abbie! And we wonder why there are so many malpractice suits and high doctor fees????? You'll have to keep us posted when you DO get your own MRI results!

By the way, could that Wayne Something be a Wayne that we know from HLAA?? Just wondering cuz he is about the right age and lives near you. . .

Hugs to you and Merry Christmas!

Mistabone said...

That's very incomprehensible and unprofessional of the MRI staff, ie A Total Bunch of Idiots! Look at it this way, at least the mixup occurred on paper/plastic images instead of the operating table! Hang in there Abbs!

Sam said...

Oh my gosh...that is the stupidest thing I have ever heard! How ignorant could they be? You should try to find out which the doctor based his diagnose on and demand an explanation from him too.

Valerie said...

I am so sorry. You will get it taken care of and remember kill them with kindness.

Wayne said...

Nope. Wrong Wayne. The year is way off.
I would contact the doctor and read him the riot act. Then I'd call the hospital patient advocate and make a complaint. I'd almost be tempted to file a complaint with the
Pennsylvania State Board of Medicine
124 Pine Street
Harrisburg, Pennsylvania 17101
Phone: 717-787-2381
Fax: 717-787-7769

There is no excuse for the screw up with the MRI slides.
Hang in there, and I still think you might want to contact JHU and see if your 'insurance' is acceptable there.
The HLAA Wayne (smile)

Anonymous said...

Holy Moly, that's a heck of a mix-up plus you received a diagnosis on top of it! I would like to think that they'd catch EVA/LVAS before your first implant anyway.

So maybe it's normal instead your head after all. LOL

Happy Holidays!!!

Anonymous said...

OMG!! I'm so sorry that this is happening to you!!

I hope this is taken care of asap and fast for your sake!!

violin said...

I'm so sorry that your MRI's were totally screwed up and you don't have the right ones.
Instead of having them mailed to you, I'd take the time and little bit of sanity you have left and drive to get YOUR films.
I've had a few instances where it took weeks to get my MRI results mailed to me. By law they have to give them to you, you are the patient and they belong to you. I'm currently waiting for MRI, CT scans and pre/post op reports to be sent to me from NY (long story) and I called them 2 months ago!!!
So I totally understand your frustration and anger...you have every right to feel that way.
Another reason to go in and hand pick up the MRI films is to be able to address this issue with someone in person (you and I both know how much feelings come across with facial emotions and they need to see that) and give you an answer to how they screwed up big time!! Hang in there and let me know what happens.

Merry Christmas and hope to see you tomorrow night in CI chat!


Only 16 days until my HINT exam!!

Jarom R. Matheson said...


I had to laugh when I read the post because that can only happen to you! It seems like crazy stuff happens around you! Hehehehe But I am glad that you caught on before they open you up for the second implant. I am so excited for you to go bilateral because you will love it!

Happy Holiday!

Unknown said...

Wow! I can't believe they messed that up! Hope you figure out the facts soon. Both of my children have enlarged vestibular aqueducts from a syndrome called Pendred's. And my daughter's name is Abby too.

Anonymous said...

As awful as it is that they may have screwed up (it'll be good to check if it's just a film copy screw up or if it's more than that) I feel sorry for the doctor and radiologist too -- this is the kind of mistake they dread making, and yes, it could have cost lives - but they didn't intend to make this mistake on purpose. Let's hope it gets straightened out right quick.

Der Sankt said...

Hilarious! I was so waiting for you to say--"And the doctor's final diagnosis: I'm cured! All my hearing's restored!!!"

But, that didn't come. :(

Your post makes me wonder how is Wayne reacting to all this? Does he have your MRI scans? Uhm. Maybe the whole insurance fiasco got the hospital head upside down??

Mwahs! thank you for sharing this!

Unknown said...

Wow. I am speechless.

Anonymous said...

Perhaps you should consult a lawyer.

VBnBama said...

Before Gage's first ci surgery, a nurse called to let me know that all looked normal on his ct scan. Well, luckily even the outside is malformed, I patiently waited for her to repeat what the radiologist told her to say...and then I shot back with..."you're looking at someone else's, my son has completely malformed ears, inside and out, it's impossible for it to all come back as 'normal'!" let's just say she called me back later when they read the correct ones.

KV Creative Designs said...

Hi, I am sorry about all the stuff your going through. I just wanted to mention...because most Dr.s won't. That even if you get the implant and 2 months later when they test it, if it doesn't work; you will never be able to wear a hearing aid in that ear again. They usually do not tell you this until AFTER the surgery, which I think is wrong. I hope everything works out for you.
Happy New Year,