Music Video Featuring Sign Language

Every morning before I begin to assemble myself, I read Perez Hilton as well as CNN news. I happened to notice that the Perez posted a video by an Aussie pop singer named Sia who uses Sign Language in her latest video, "Soon We'll Be Found". I fell in love with the song, the video, the psychedelic utopia of trippy colors and decided to caption it.

If you cannot view the video, click here.

Why did she choose to sign in her video?

"Sia decided to sign as well as sing the song, in honor of the language and those who use it to communicate. “I've always been obsessed with the beauty of sign language,” Sia explains. “To ignorant hearing me, the movement and expression appears as a dance -- a beautiful, emotive dance. But the real beauty is the communication hidden within these perfect shapes.”"

But I can't tell what the hell is being said after 3:30 seconds. I think it is vocalizations with her repeating "I know we're lost but soon we'll be found". So if anyone with better ears then mine, not an impossible feat might I add :) could take a listen to the video and figure it out for me, that would be absolutely superb :)

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! :)

MRIs and Cochlear Implants

Let's talk MRIs.



When I went to Chicago for the ALDA convention, I met several people that didn't want to get a cochlear implant because they need an MRI every six months. I will admit when I first started researching cochlear implants, MRIs was not a major concern of mine. I just read the I can have a MRI done if the magnet was removed. Fine. Great! That is all I needed to know but now I realize how much it means to others that suffer from other illnesses where they require MRIs.

Why would a person need to get one? MRIs provide better contrast in soft tissue, which helps to distinguish between normal and diseased tissue. MRIs do not show bones like a CAT scan or X-Ray. Brain tumors, strokes, multiple sclerosis and Neurofibromatosis, type 2 (NF2), are diagnosed by an MRI. Which means anything metal - paper clips, pens, keys, jewelry, scissors, underwire in your bra, belts, glasses and any other small objects can be pulled out of pockets and off the body or out of the body can become dangerous projectiles hurdling at the opening of the tube at incredibly high speeds.

Joy. Its a good thing that they make you remove anything metal.

Could you imagine if someone left a tongue piercing in and they turned the MRI machine on? Ouch.

Anyway, I did me a little research on MRIs. The magnet in an MRI system is rated using a unit of measure known as a Tesla and they are grouped into three fields.

Low-Field = Under .2 Tesla

Mid-Field = .2 to 0.6 Tesla

High-Field = 1.0 to 1.5 Tesla

What is the difference between low-field and high-field? The high-field setup has superior image quality AND has a higher rate of detecting tumor remnants. This abstract that I found supports that statement. The next generation of MRIs are circulating around at the strength of 3.0 Tesla.

Sounds like the higher the Tesla - the better the detection rate. I would imagine it would be like going from a two mega pixel camera to a ten mega pixel camera.

Now both Advanced Bionics, HiResolution Bionic Ear System's HiRes 90K implant and Cochlear Americas, Nucleus Freedom is MRI Safe up to 1.5 Tesla with the internal magnet removed.

I took a look at Med-El's website and discovered in bold letters, MRI Safe - Without Magnet Removal. Leaping lizards, no faking! They don't require the internal magnet to be removed. In fact, it is designed where the magnet can't be removed at all.

That cool!

But then I read the fine print:

In the US, PULSARCI100 and SONATATI100 are currently approved for use at a scanner strength of 0.2 Tesla.

Oh. That means recipients of a Med-El device can only use MRI's rated at low-field strength of 0.2 Tesla where they could be sacrificing image quality that could lead to a potential misdiagnoses.

What if one with a Med-EL device wants a high-field MRI that has a better image quality and higher rate of detection? Does that mean the entire implant has to be removed because they don't have a removable magnet?

Yikes.

This is a link to an article that talks about the latest MRI machines that are rated 3.0 Tesla which can demagnetize an implant. It also discusses how there is permanent damage to devices with non-removable magnets such as Med-El's PULSARCI100 and SONATATI100.

However, I'm privileged to know someone in my harem of cochlear implant users that had an MRI done and had the internal magnet removed and what he had to say really calmed my nerves if I ever had to get one.

First of all, it seems to be kind of a rare event. My surgeon has performed over 550 implant surgeries and has never had to do this procedure (taking the internal magnets out, then reinserting new magnets). In fact, of the 700+ Midwest Ear Institute patients, I believe I am the first to have an MRI. To get an MRI, the internal magnets need to be removed from the implant, then you get in the tube, then back to the OR to have new, sterile magnets and stitched up. The thought of having the internal magnets taken out probably bothers some people but it shouldn't - it was not a big deal at all. In fact, they asked if I wanted to be sedated and I said no - so they just did a local and it was fine. There is a little pain...but very little, and easily handled with OTC pain relievers. In fact, I haven't needed any today at all. I was going to write a great, detailed account of this but it is such a non-event that there is little to write. Kind of like getting some stitches in your head - that's it. The most irritating thing is being inside the MRI tube - at least you can't hear it though, because you are completely deaf while inside.

I wouldn't go get an MRI for fun, but if it is suggested that you need one, please do not hesitate to do it. An MRI is an incredible piece of technology and can be a difference maker in terms of diagnosing certain things.

And that is all he said folks!

ALDA Highlights - Karaoke Party

Time is just seeping into unknown crevices and leaving me with little or no time to do much of anything. Priorities are rearranged and some of them are put on the back burner like this blog. It has been a month to the day that marked the end of the ALDA Convention and I wanted to share some highlights that everyone wants to know about - the Karaoke Party.

But first, a little history on the Karaoke Party. Since most of us are deaf, we can't really follow along with the words of the music nor can we keep a tune. What they do is they put the words to the song on a big screen so everyone can read them and they pass out balloons to feel the music. The balloons are far more sensitive to vibrations and far more reliable then using a table or our feet to feel the beats. How did this traditional use of balloons start? It started when a member went over to the next banquet room where they were having a wedding and he kind of, sort of - borrowed some balloons. The bride even joined them when she saw how much fun they were having. That was a start of a great tradition. I strongly suggest that you check out LaRonda Zupp's vlog that gives you a better idea of how the whole balloon things works. Click here to watch it :) It has yours truly featured.

But let me give you a little background information. Since the Karaoke Party is supposed to be the main event that everyone looks forward to and the date just so happen to fall the day after Halloween. Some of us decided to dress up. Jennifer and I brainstormed for days, we even got her kids involved. One of her offspring thought it was be a rocking good idea if we were a giraffe - Jen would be front since and I would be the back end of the giraffe. It was a novel idea and I applaud them for their creative endeavors BUT I don't want to be the back end of anything. :) We nixed that idea. I came up with this idea to be Abby on NCIS. I was really stepping outside of my comfort zone because Abby is gothic with chains, black lipstick and the ultimate combat boots and this Abbie that is typing out this blog is all about classic ivory lace dressed in chiffon and strands of pearls but as you can see, I managed to pull it off.



Jennifer decided to be her natural peace loving self as everyone's favorite hippie complete with shoes that brought her to a final height of six foot, five inches. I had a crick in my neck by the end of the night. :) She is hunched over in this picture. You will see the full heightage further down.


We were not the only ones dressed up! From left to right - LaRonda Zupp from Ear of My Heart as the cutest little fairy, Ken Arcia brought Elvis back from the dead, Abbie as Abby and Jennifer as the tallest flower child in the history of mankind.


Surprisingly enough, I thought it would have taken me a couple of drinks to get me up on stage to sing but with a little coercing, I got up there completely sober. I was doing my best Milli Vanilli impression. I look rather convincing don't I?


This is my favorite picture. This is Thing 1 otherwise known as Maddy, the daughter to one of my very good friends, Tina Childress. I wanted to take this little girl home with me. I was just so impressed with her intelligence and her signing capability - far better mine. Plus, I was having a political discussion with the little McCain supporter as we were walking down a busy highway made it all the more fun.


This is Mr. Dave Litman and I spreading the good word of peace, love and rock and roll. :)



Tina Childress as the Dragon and her adorable munchkins, Maddy as Thing 1 and Mia as Thing 2, Jennifer the flower child and yours truly signing off.


This is the founder of ALDA, Bill Graham with the very lovely and lively Elvis. :)

It was good times, good times indeed. You can go here to check out more pictures from the ALDAcon and if you are interested you can join ALDA on Facebook. :)

Cogan's Syndrome

There are many reasons a person can lose their hearing. Some people lose it gradually and some loss is sudden. My inbox is littered with people that go from one extreme to the other - perfect hearing to sudden deafness. Many personal tales have words like Autoimmune Inner Ear Disease, Meniere's disease and Meningitis are duplicated several times over.

I've seen the symptoms sprinkled across my screen so much that they almost seem to run together.

hearinglossvertigotinnitusphotophobiavomitingdizzinessnauseamigraines

Well, I learned about a new one at ALDA. I was reading the CART screen captioning the voice of a woman that identified herself as a Coganite.

Coganite, Coganite, Coganite

What the hell is a Coganite? A Coganite is a person that has suffered from Cogan's Syndrome. It is a rare, extremely rare autoimmune disorder can cause deafness and blindness. I believe I overheard the woman say that there has only been about 150 cases in the United States. So yeah, I would say that rare alright.

The symptoms of Cogan's Syndrome are:

• Rapid onset of hearing loss in one or both ears
• Vertigo
• Nausea
• No balance or severe gait
• Tinnitus
• Nonsyphilitic Interstitial Keratitis (inflammation of the eye),
• Sensitivity to light
• Vasculitis (inflammation of the blood vessels)
• Arteritis (inflammation of the walls of arteries)
  

It seems to occur in young people from the age 22-29 years old. It has been known to occur in some older people but it is more common with the younger crowd. No one knows what causes Cogan's Syndrome. The good news is that there is a treatment for Cogan's which is cortisone type medications such as everyone favorite mood changing steroid -- Prednisone. The bad news, if it is not diagnosed quickly, a person usually suffers from a complete hearing loss and partial vision loss.

The good news is that no one has to deal with this alone. You can contact the Cogan's Contact Network if you or a family member has been recently diagnosed and you want to connect with others that have been down this road.

For the rest of us, we can inform our doctors of this extremely rare condition to raise awareness because an affected person hearing and sight can be saved and it is only a matter of time that it can.

I. King Jordan at ALDA

Glancing through the ALDA program book, I came across a familiar name that was going to be giving a speech at a luncheon. I found myself wondering, "Who is I. King Jordan?" because I hadn't the faintest idea of what he has accomplished. With a little Googling here and there and chit chatting amongst others, I found out that he became the first deaf president of Gallaudeut University after a week long protest in 1988. I didn't know too much about him because I was only eight years old. I was more into running over my cabbage patch dolls and beating the old commodore 64's up. Plus, I wasn't into watching my non-captioned television.

Back in 1988, Gallaudet Board of Trustees Board of Trustees had three finalist for presidency position, two of them being deaf and I. King Jordan being one of the two. The Board of Trustees Board of Trustees announced that they picked a hearing person for presidency, a woman named Elisabeth Zinser. There was a member of the Board of Trustees name Jane Spilman that said something to the effect that, "Deaf people are unable to function in a hearing world." After years of oppression, the students, staff, alumni and faculty felt it was time for a deaf president. This started a week long protest called "Deaf President Now."

The first day, the campus marched from the University to the hotel where the Board of Trustees were holding they're meeting and demanded an explanation. This march continued to the White House then to Capital Hill and back to campus.

The second day, the protesters took steps to block access to the campus and the board members were presented with four demands that were promptly dismissed.

1. Zinser must resign and a deaf president selected.
2. Spilman must resign from the Board.
3. The percentage of deaf members on the Board of Trustees must be increased to at least 51%.
4. There must be no reprisals against any of the protesters.
   

The protesters marched back up to Capitol Hill and started to attract media attention.

The third day, campus was reopened but students boycotted classes. There was four members of the student body emerged as leaders of the protest. By now, the DPN Revolution was on every news channel and newspaper across the country.

The fourth day, Jordan, the four student leaders and Elizabeth Zinser had a meeting. The students encouraged Zinser to resign but she did not want to comply. There was a press conference held that day where I. King Jordan announced that he supported the Board of Trustees decision to pick Zinser as president.

The fifth day, Jordan retracted his support and Zinser resigned. The students protests and rallies intensified because only a half of one of the demands have been met.

The sixth day, nothing much happened apparently.

The seventh day all of their protesters demands were met.

• I. King Jordan was named the first deaf president of Gallaudet University.
• Spilman resigned from the board of trustees.
• Phil Bravin, the only deaf member on the Board of Trustees was appointed Chair.
• No reprisals to the students.
• A task force was going to be created to ensure that there will be a 51% of the Board of Trustees will be deaf members.
  

Therefore, history was made. The students accomplished so much in so little time. It was time that someone that was one of them took over. Once I learned the history, I was really excited to listen to I. King Jordan give a speech while I was at the ALDA convention. He is late-deafened. He lost his hearing at 21 years old in a motorcycle accident. He talked about how technology has changed over the past twenty years. Back then, there was no closed captioning or no professional interpreter services. All we had available was basic email, pagers and TTY. Now we have options like interpreting, closed captioning, CART, PDA's and Blackberries, email attachment and text messaging, Captel, VRS (Video Relay Service) and VCO (Voice Carry Over). Times have truly changed.

He started talking about advocacy work since he is a full time advocate for the deaf and disabled. He left quite the lasting impression on me when he said that if you could reach to one person, help that person become a strong deaf individual. Being deaf can take a toll on a person especially when they have had perfect hearing at one point in their life. There is no reason why they have to face this alone.

He brought up the fact how cochlear implants are subject of sensitivity with the Deaf Culture. I know this first hand because a majority of the hateful discrimination that I get is from culturally Deaf people that feel that there is nothing wrong with them. I find nothing wrong with them either but they find an awful lot wrong with me because I chose to hear with a cochlear implant. He talked about how cochlear implants change the way communication happens because those of us with a cochlear implant listen and talk more then sign. He expressed that there should be a way to reconcile the different communication methods. This brings me to a profound quote that Jordan used to close his speech.

"Don't ever forget that a deaf person with an implant is a deaf person with an implant. You stay a deaf person but the technology helps you with your communication."

Jennifer, I. King Jordan and Myself.

TV in a Hotel Room with No CC?!

Ever go to a hotel room where they have a television with no closed captioning?

To make things even worse, the hotel has a special remote control with a menu that just gives you options to buy porn.

So you wander over to the front of the television and all it has is super simple buttons to change the volume and change the channels? All of us know that we need a MENU button to turn on the closed captioning.

So what is a deaf person to do? Just hold the two volume buttons together simultaneously and just like magic, instant access to the closed captioning menu!!!

It is kind of funny but at the Doubletree Hotel Magnificent Mile, they had to dispatch a couple of their finest engineers to a couple of the ALDA attendee's rooms to figure this out.

And for the record, I didn't need an engineer to figure that out :)