Date Confirmed!

I got an e-mail from my audiologist saying that the surgery is scheduled on June 5. I have to be at the hospital at 6:30 – 7 a.m.  She warned me that about one in ten adults may feel vertigo/tinnitus for one to two weeks after surgery. She also responded to another question I had about if my health insurance will cover mapping. She said that she has never needed to ask for pre-approval for mapping except with Medicaid. I asked her some more questions about when I need to get my meningitis shot and if there was anything else I needed to do before my pre-op appointment. I also asked to go ahead and schedule my mapping appointments.

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.

Audiologist

I talked to my audiologist again today. I’m happy to hear news, even though it’s not that significant. She basically told me that she had talked to the surgeon about my case, and she is now in the process of getting me in touch with the nurse to schedule everything. I’m like… finally! My schedule is getting more and more full by the moment and it would be nice to know the dates so I can tell people, “No, I won’t be here.”

Cochlear Implant Surgery Risk

So today I looked on the FDA’s Web site on cochlear implants. I was particularly interested in finding out what all the risks are and if anyone has died from the surgery or the cochlear implant itself.

The risks the FDA lists are:

• Injury to the facial nerve. I knew about this one. My audiologists told me that they take a CAT Scan for this purpose. They want to know if you have any abnormal facial nerves and they want to know where they are. This way, you know your own unique personal risks before you go into surgery as the doctors will sit down and discuss them with you. So they already know where the nerves are. Not only that but they will monitor them during surgery. I think because of this, there is probably less and less of a risk of this actually happening, particularly if you have a good doctor and good genes.
• Meningitis. I don’t think I’m at risk for this. It sounds like it’s mostly in children up to five years of age. I couldn’t find the exact years, just studies done on that age group. So I don’t know if anyone older has gotten meningitis as a result. But basically if you give the kid a vaccine before surgery, and monitor for the symptoms of meningitis then it should be fine. But then again, parents should be doing these things for their children anyways (hearing or deaf!). I found a study done in the United States on the risk factors. (see below). The number of cases in Clarion users (and two deaths) in this case (of 18,000 surgeries of 60,000 total out there) was a concern among professionals. It was found that the higher risk was because of the “positioner” part of the implant – a positioner is meant to keep the electrodes in place and position them during surgery. The Clairon with the positioner has since been voluntarily recalled and is no longer made. The FDA did not recommend re-implanting children who already had these implants. Remember that the below numbers are from 2002 and are a bit old. There has been another study done in 2004 using the same people from a 2002 study – I’m not sure if the 2002 study involved in this study is the same one that I’ve been talking about. They found that the individuals who had the positioners even two years after the study were at a greater risk of Meningitis than the rest of the population. Remember that the numbers below are from the 2002 study in the first link I posted. Mel-El doesn’t have a risk in the United States, because not many doctors will recommend it (this is my theory).
  • Advanced Bionics ‘Clarion’-8 cases of 7,271 implant
  • Cochlear Corporation ‘Nucleus’-14 cases of 16,617 implants
  • MedEl Corporation ‘Combi 40+’-0 cases
• Cerebrospinal Fluid Leakage. The FDA Web site said this was the result of a hole in the inner ear or another hole in the covering of the brain as a result of the surgical procedure. Get a good doctor. I doubt this would happen.
• Perilymph Fluid Leak. The perilymph is the fluid in the inner ear. I believe it is partly responsible for balance. The FDA said it may leak as a result of the hole they have to make to insert the electrodes. From what it sounded like, my audiologist said that the surgeon will fill this hole with muscle tissue and then your body will heal itself back up. So again, get a good surgeon.
• Infection of the Skin Wound. Keep it clean, follow the doc’s orders and this shouldn’t happen. If it does you’ll go back to the doc and he/she will probably fix it.
• Blood or Fluid Collection. Again this is probably something that the doc can fix.
• Attacks of Dizziness or Vertigo. From what I’ve seen, this will go away as you heal. You just might have to take some pain killers or something. Again, talk to the doc.
• Tinnitus. This is the one I’m worried about. Some people report more tinnitus. I don’t think there’s a way to fix it, unless you take some medicine. But it’s something that may be a part of your life from then on.
• Taste Disturbances. Usually these are temporary (that’s what my audiologist made it sound like). I’ve seen articles about how sometimes you can lose taste in half of the taste buds in your tongue. Talk to the doc if you experience this, of course.
• Numbness. Just like with any cut, scrap, surgery, etc. etc. It’ll be swollen. Ask your doctor when the numbness should go away.
• Reparative Granuloma. This is inflammation that happens if the body rejects the implant. I’ve heard of docs taking implants out as a result of a malfunction, so I imagine they can take it out if your body rejects it. I have yet to hear about this occurring to anyone. Titanium is well suited for biological things, and your body is not likely to reject it.

So my conclusion so far is that no one has died from the surgery. The only thing a person may die of is Meningitis. I’ll let you know if that is not the case. Also, the surgery is pretty low risk. For the most part, complications can be corrected.

**Again, I am not a medical person. This is why in most every risk I list here, I recommend that you talk to your doctor. So even if I say it may be temporary, I don’t want you waiting for it to go away. Listen to your doctor and talk to your doctor about both the risks before surgery and if you’re experiencing them after surgery. I have found that it’s good to have an idea of what the risks are so you can have more questions ready for your doctor. That is my purpose of posting this list in my blog.

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.