Category Archives: New Orleans

CI Eval. Results.. Though a Bit Discouraged

I got to my appt. 15 minutes early to fill out paperwork. I was ushered in with the audiologist. She first gave me a negative outlook on the whole thing while the audiologist I have in Texas has a really gun ho attitude. The audiologist I saw that day really wasn’t sure how well I was going to hear with a cochlear implant in the ear that I haven’t heard out of for 22 years. I know there will be a challenge; I’ve taken speech therapy before for many years. I didn’t understand why she was so negative over it. I then specifically told her that I wanted a CI evaluation. There was a lot of confusion because for some reason I was not down for a CI evaluation. They had me scheduled to see the audiologist for a hearing test and then to see an ENT. I had no idea why. Even though I explained to the audiologist what I wanted, she still sent me to see the ENT with doubts that she would have time to do the CI eval. that day. I was upset; my husband was starting to get upset. The ENT, like we had suspected, had no idea why we were in there and told us he would not bill us for the services. This was after waiting for 30 minutes just to see him after getting a hearing test. So I went back to the audiologist. I was trying to be patient, but it was starting to wear thin. I have already waited a month just to see her and my perspective of the place was that it was mostly about children and people who lost their hearing later in life. There wasn’t much room for me there. That appointment discouraged me in more ways than one. Luckily the audiologist just buckled down and did the tests without much fuss. When it came down to the results, she was once again negative. That was disappointing. Apparently, I am on the borderline. I made a 60% on two of the tests (two syllable words and sentences) but a 20% in noise and one syllable words. This makes no sense to me. Maybe someone can explain why the first two tests matter. After explaining dully that the insurance may not cover me, she pronounced me a candidate by the office’s standards. I understand that a lot of what she said that day may be things you need to tell patients, however, she went about it in such a manner that was a bit defeating and that’s what bothered me. I need someone for this process who is positive and excited. I don’t think I can succeed as well in therapy without a doctor who is encouraging. Danny Delcambre, the deaf blind individual from Louisiana who opened the Ragin Cajun restaurant in Seattle, once listed his five spices of life, the second one being that you surround yourself with positive people and to get rid of the negative people.

I think I’m going to steer clear of New Orleans’s audiologists for awhile. I asked the audiologist if she could do the mapping and she said that very rarely that they take a patient who has gotten surgery elsewhere. This makes no sense to me. I’ve heard of this happening with other people – they will go get the surgery done somewhere, but the mapping process done closer to home. She did give me some room in there to argue with her, but jeez I would much rather work with a positive audiologists than with someone who has less hope on how I will turn out with it.

On a positive note, I did get the tests done, so hopefully I will never have to do that again. And I got to see and touch an implant. It was a bit bigger than I thought it would be. It’s heavier than a hearing aid and it felt so strange on my left ear. If I do get it, I wouldn’t be surprised if I try to put in on my right ear. Also, the electrode coil is tiny. I didn’t realize a cochlea was that small. It felt weird that this was such a small part of my body that they needed this equipment for – equipment that was probably 100 times larger than it was. I think the cochlea was just a tiny bit larger than this -> o . FYI, the blue color for the external part is really BLUE. I think I’m going to not get that one. But the silver one was slightly-blue looking which I liked. I am also looking at the brown one since it blends in with my hair.

I learned something interesting: they’re actually inserting two electrodes. One is the electrode into the cochlea and the other is the “grounding” electrode. It doesn’t go anywhere; it’s mostly because you’re dealing with electricity. It probably goes somewhere between the skull and the skin.

I did hear from my surgeon’s office. They want the tests results, which should be on its way this week. Then we’ll see if I actually can get insurance coverage or if I have to fight tooth and nail for it.

I’m a bit worried because I’m starting to lose my excitement about it and am wondering once again if I’m making the best decision for myself. I don’t feel I have found my niche in New Orleans yet and because of that my difficulties with my deafness surface a lot more often. I have seen the numbers: there are probably only about 150 deaf people in New Orleans. So the community isn’t as strong as it once was and maybe not as strong as I need it to be (which is where I think my niche lies: in making it stronger, I just don’t know my role yet).

Another thing I wonder about, am I OK with needing a strong community near my place of residence? There may be times in my life where I may find myself in a situation like this one.

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Church on Dauphine Street

A story of a New Orleans Catholic church, Blessed Seelos Catholic Church, will air tomorrow night on PBS (that’s Channel 12, WYES, if you live in New Orleans) at 10:30 p.m. CST. I’m not sure if this is a universal time, so check your TV listings.

It is a story about the rebuilding of this church after Katrina and the trilingual community in tow – English-speaking, signing (i.e. deaf) and Spanish-speaking. There is a common theory here that a lot more Hispanics have come here since the hurricane, mostly because of the job opportunities in construction. Seelos Catholic Church holds three masses: the English-speaking one on Saturday nights, then the English and ASL one on Sunday morning and finally the one in Spanish at around noon on Sundays.

There’s a little more to this story than what was on a Web site that gave some details on this show: The Web site says the church is in the 9th Ward, I’m pretty sure that area is Bywater, not the 9th. It’s right next to the 9th though. You can tell because there’s a canal that separates the two.

This church wasn’t always called Blessed Seelos Catholic Church. Just before the hurricane, it caught on fire. Then the hurricane pulled the roof off. Because the altar was destroyed in the fire, they were able to rename it. But other than that, I think the stained glass windows were pretty much left intact by the two disasters. It opened for services December of last year.

I hope you get a chance to watch it!

Louisiana School for the Deaf Homecoming & Jambalaya Giveaway

I woke up at 7 a.m. yesterday (ugh!) and drove to Baton Rouge for LSD’s homecoming. I have never been to LSD before or any of the other places I was going that day; this was all a new experience for me. There were several activities going on that day. The day started off with Louisiana Association of the Deaf’s workshop at the LSD student center. So I headed down there. It wasn’t too hard to find, LSD is directly behind the LSU campus (in fact we could see the LSU stadium from LSD’s stadium – that was interesting because there was a huge LSU game going on at the same time). I bet most LSU students have no clue that it’s over there. Anyways, the first thing I saw as I drove onto campus was huge letters in a small man-made hill: LSD. I’ll tell you right now, I do not like that acronym; when I complained, someone asked me “Why? Do you do LSD?” No, was my reply. “Then it’s not a big deal.” It didn’t seem like something dwelled on by the deaf community there, but it’s not good from a public relations stand point. The guy has a good point though; they aren’t going to get away from that acronym, not when every deaf school in the country follows the same acronym rules. So I’m trying to accept that it is here to stay whether I like it or not.

So second thing I noticed was the general layout of the campus. It was obviously built in the 70s, it had that kind of 70s feel to it where the building were a slight depressing muddy-brown and the buildings were simply made with bricks. For the most part, the buildings were one floor in height, there wasn’t anything special about them. Passage ways from building to building weaved there and here. The part that essentially made it shine was the glorious green meadow it was built upon. For the most part, I felt far removed from the city that surrounded it.

The first goal of my day was to find the LAD meeting. It wasn’t hard. I was able to pick out a sign with the words “Student Center” painted on it. The only difficulty was that it wasn’t strategically placed. It was sticking out of the ground between two buildings. I tried the building on the right first, to find that it was locked. I was able to get into the building on the left. The meeting room wasn’t immediately obvious, so I wondered around the building. One of the first things I saw was a collection of old objects. There was a old door without a purpose. When one looked through the window of the door, one could see a picture on the wall of the old LSD campus. This one was one of grandeur. People had taken the time to build this one. The buildings were white and thought was placed in the designing of the place. It reminded me somewhat of the Titanic with its wood craved stairwells and it’s painstaking details. It also reminded me of some of the nicer and older homes of New Orleans. That building has since been taken over by the Baton Rouge police department.

LSD's North Campus

I also saw a group of old objects such as a wheelchair, a dental chair and a bed. I wasn’t sure of the dates of these items, but the wheelchair looked like the one that FDR used. One of the things I love about deaf schools is the history behind them. Most of them collect old hearing aids and other memorabilia. They also tend to be around for a long time. In LSD’s case, they have been around since 1852; they’re older than my university!

One of the interesting things I learned that day was that LSD almost closed. Attendance was dwindling down. Guess what changed that? Hurricane Katrina.

I wandered a bit further and found the meeting. They had already started, so I sat down in the back (Yay, I didn’t NEED to sit in the front – to lipread – and distract others by being late!) . They went over emergency preparedness (see my previous entry), the NAD conference – they’re very excited that this will be New Orleans, I am too! – and VRS stuff.

From there, I socialized in the same room for a bit and took off for lunch. When I came back the volleyball game was over and I spend it socializing a bit more in the room outside of the volleyball game. Then I went over to the football game, talked to more people. It was at the football game that I talked with a deaf blind friend of mine. He told me that his name for his cane was “Le Tigre” and let me look at and touch his Braille watch which I thought was the neatest thing.

The football game turned out to not be that great, so I got dinner and went to the Baton Rouge Association of the Deaf social. There was another social going on at the same time as BRAD at the First Deaf Baptist Church. I didn’t go to that one because it was for LSD Alumni Association.

The BRAD club almost closed too. Hurricane Katrina didn’t bring it back to life, Texas Hold ’em did. Yee Haw!

I got my hands on a copy of a newsletter for the St. Gerard Community for the Deaf, which is the deaf community of my Catholic church. I was so excited to get this. Imagine my surprised to get this newsletter in Baton Rouge, not New Orleans. OHH.. and get this, they have their very own Krewe of Dauphine! A krewe in New Orleans is very similar to a “crew”. But it is the krewes that make the floats for the Mardi Gras parades. They also have parties. The Krewe of Dauphine is actually having a party, but it doesn’t look like they will be doing a float.

I love the name. They took the name Dauphine because the deaf ministry is located on Dauphine Street. But Dauphine is actually the woman who is next in line for the throne of queen of France. Marie Antoinette was once the Dauphine of France before her father-in-law passed away. You can guess what I want to be for Halloween, and no she never said “Let them eat cake.” She was a woman of unfortunate circumstances.

They are also having a Deaf Thanksgiving and a Christmas party. I am so excited. I also got myself on the LAD mailing list so I will know about their meetings as well as the BRAD.

I’ll try to list deaf events that I know about in Louisiana on here. I’m excited about the knowledge I’ve acquired in just one day. Oh and the Jambalaya from the entry title is because I got some jambalaya from BRAD to bring home to my husband. He adored it. Said it was some excellent jambalaya. 🙂

Program Opens up a New World of Sound

As posted in the Times-Picayune today. It talks about a language program for oral deaf children in New Orleans. I don’t think they include ASL (I couldn’t find it in the article) in this program, but I could be wrong.

Deaf Activities in New Orleans

There are some activities going on in New Orleans still, but I get the sense that it wasn’t as strong as before. I have heard – by word of “hand” – that there were several deaf organizations and a deaf club here before the hurricane. They’re not here any more (as far as I can tell).

There are two monthly coffee chats. One in Metairie and one on the West Bank, in Greta, I believe. I know there’s a New Orleans Deaf Baptist Church. I haven’t visited that yet because I’m not Baptist, but I know the people who run that pretty well. Also there’s the Deaf Ministry at the Catholic Church in Bywater and an “Assembly of God” that does signed services on the West Bank (Really it’s the south bank people!!! I don’t know why but when I moved here I could not figure out where the “West Bank” is. It’s because rivers only are supposed to flow north and south. But in New Orleans the river does a funny half circle from west to east so if you look at a map it looks like the north and south bank- yeah confused me like crazy).

Other than that, I don’t know of any events. I’ve thought awhile about starting a Deaf Professionals Happy Hour. It’s difficult because of the break down of the deaf community here. Most of the young deaf people are Baptists. They will go to the Coffee Chat in Metairie, but Baptists don’t drink, so they wouldn’t be going to the DPHH. There are some young Catholics, but mostly the ones I’ve seen so far are parents. I don’t know a lot about the Assembly of God folks.

It would be nice to figure out a way to get these three communities together. I just don’t know how to do it yet. Maybe by simply starting the DPHH, I can bring people together regardless of religious background or reach out to those who are not a part of any church here.

Well the only mailing list that I know of in New Orleans is put together by the wonderful woman who is the wife of the deaf pastor of the Deaf Baptist church. So I know I can’t use that.

There’s another Web site called: www.deafbayou.com. I originally thought it was just for southwest Louisiana, but now I am noticing that they’re putting out events for New Orleans too.

Perhaps I can follow the footsteps of the Austin DPHH and start out with a New Years Eve event. So be on the look out for a noladphh.com. It would be neat to get it started before the National Association of the Deaf conference here next year: www.nad.org. Or maybe I’m just barking up the wrong tree, we shall see.

Myths About Cochlear Implants

I thought I would make a list of things I once thought, but turned out not to be true about cochlear implants. A couple of them are also what I’ve observed from other people’s perceptions.

1. The string of electrodes destroys the remainder of the hairs(cilia) in the cochlea. FALSE! Technology has evolved (starting a good while ago) to where the electrodes are flexible and can “hug” the cochlea. Before it was “stiffer” and when the surgeon inserted it, it would hit against the sides of the cochlea and thus destroying the hairs.

2. The internal piece erodes later in life. FALSE! The internal component is made with titanium, which does not corrode.

3. You can’t get an MRI with the implant without taking the internal piece out. FALSE and TRUE. I’m not sure what all of the companies do, but I know for a Cochlear CI, the magnet aspect is easy to remove and can be separated from the rest of the internal implant. So if you needed a MRI, they would just simply make a slit in your skin and pull out the magnet (this is how I understood it). There are also other types of machines available that does not do the same thing as a MRI, but can find out the same types of information. For example, a CAT scan involves taking a jug of iodine or another contrast material (which is pretty gross by the way!) and a machine takes “sliced” x-rays of your body.

4. You can’t go scuba diving. FALSE and TRUE. I have been told that you can engage in “recreational” scuba diving – at least with Cochlear (it’s best to talk to your audi for the specifics – they can tell you the maximum distance you can go underwater), but if you’re one of those people who goes looking for ship wrecks, then this might not be for you.

5. You can hear perfectly from the moment you’re activated. FALSE. For the most part, people report hearing “bells” or “Mickey Mouse” (if they’re lucky). It may take a month or two or three to start really understanding speech. People often have to engage in therapy such as listening to audio books and following along in the book itself. The audi will usually send “homework” home with the recently-activated implantee. Remember, you haven’t used that part of the brain in years, if at all, it takes awhile for it to adapt. The human brain is a wonderful thing in that it can adapt to things so well, no matter what age. Now age is a factor, when you’re a child, you’re neurons are constantly changing to fit your needs. But later in life, it may take longer for them to “learn” something. That’s why it’s good to practice. This can be applied with hearing aids and ASL too.

6. Cochlear Implants cure deafness. FALSE. It’s a COMMUNICATION TOOL, just like hearing aids, just like ASL. I don’t even think that a person who has one can have perfect hearing (although I could be wrong). I was told that I may hear at the 30 to 40 db range if I get one. A 20 db to 0 db is a normal range. At the end of the day, when someone takes it off to go to sleep at night, they are deaf.

I think this rumor is probably one of the most damaging rumors out there. What if you’re in an emergency and you’ve lost your cochlear implant? How will you communicate with people? How will you hear the fire alarm at night? How will your child (with a cochlear implant) get out of the house in time? Those are some things that people with cochlear implants need to ask themselves. It’s not something to be taken for granted. I’m in New Orleans and a lot of people talk about those folks that didn’t have hearing aid batteries or cochlear implant batteries as a result of the hurricanes. Organizations were donating these things to evacuees. But imagine if you were someone in a shelter and you didn’t have a place to recharge your batteries and people were saying over a PA system “If you are deaf, come to the front.” (I’ve heard that same story over and over again, it took people who knew sign language or who knew how to communicate with people with hearing loss to go through the shelter to get to these people – they would hold up signs – and these people didn’t have access to these shelters right away) You’re not going to hear that. It’s always good to have that emergency plan.

** a side note, like my disclaimer says, I am not a medical person. It’s always best to ask your doctor/audi about these things. I’m publishing this as a list of things I’ve come to understand in this process of researching cochlear implants.

Audiologists in New Orleans & Contact with Cochlear

I think there are actually a lot of audiologists here, but only two that specialize in cochlear implants. On Monday, I was able to schedule an evaluation on Oct. 24 at 2 p.m. Today I finally got in touch with the other one. This is the one I’ve been trying to contact even before I talked to my current audiologist. I’ve e-mailed her, left her phone messages, no avail. Finally I was able to talk to her today (this was after having to “yell” at the receptionist for her not calling me back – the receptionist then transfered me). She seemed rude from the start. Well, maybe not so much rude, but the whole time I felt like she was talking down to me like I was 12. I explained to her what I was trying to do – that I already had an audiologist and I was just trying to get the CI eval. done because I didn’t want to take an entire day off of work just to go to Texas for a 30 minute evaluation. Well she told me that it was “standard procedure” and that I would need to go to Texas. Granted, it may be standard procedure, but I told her that my audiologist said it was fine. Well she kept pushing it anyways. Wanted to know who I was seeing, and kept telling me that I would have to go to many appointments after the surgery. I already know that, I’m not 12, I want to pay you to do the evaluation, not to analyze my whole life. I gave up my argument after she said that she didn’t have anything available until November.

OK, rant over. Today, I got an e-mail from a person that Cochlear referred me to. They have a “match” program where they match up potential candidates with people who already have a cochlear implant. Interestingly enough, this guy actually works for Cochlear. We’ll see how this goes, but in the mean time I am talking to one, maybe two people who have them.