Meningitis

Very rare one would get meningitis from the surgery, but as a preventive, it is imperative you receive the pneumococcal vaccine called PPV23 before the surgery. This one is for adults. For children under the age of 5 receive the "Prevnar” (PCV7). You get this needle at your family doctor's office and this is covered under Medicare.

When you are approved for the cochlear implant surgery by the surgeon, your audiologist will provide you a "guideline" that is shown below. This is just for your FYI as this is what I had received, however, please refer to the guideline your own audiologist and surgeon provides you.

Meningitis and Cochlear Implants

Meningitis is an infection of the lining of the brain. There are two main types of meningitis, viral and bacterial. Meningitis in people with cochlear implants is most commonly bacterial meningitis (e.g. - pneumococcal meningitis).

Having a cochlear implant may slightly increase the risk for meningitis. This risk can be lowered through vaccination for meningitis. There are Health Canada guidelines for meningitis vaccinations.

Vaccinations

There is an effective vaccination called “Prevnar” (PCV7) available from your family doctor for children age 5 and younger. This vaccination is covered by MSI as a routine immunization for all children.
The Nova Scotia schedule for Prevnar is ages 2 months, 4 months, 6 months and 18 months

For those over age 5 and adults, there is a pneumococcal vaccine called PPV23. This vaccination is covered by MSI.
Booster vaccinations are recommended five years after the first vaccination and are also covered by MSI for high risk groups such as cochlear implant users.

Guidelines for the administration of these vaccines are available from Health Canada, National Advisory Committee on Immunization (NACI) - Advisory Committee Statement of 1 April 2003, vol. 29, ACS-2-3. (see over)

Who is more at risk to develop meningitis?
Those under age 5 or over age 65
Those with anatomical malformations of the cochlea
Those with immune deficiencies
Those with deafness caused by a previous episode of meningitis

What are the recommendations of the NS Cochlear Implant Program?
The NS Cochlear Implant Program recommends vaccination following the Health Canada guidelines and NS schedule for immunizations. However, choosing not to have the vaccination will not prevent you from getting a cochlear implant.
Please take this information sheet to your family physician to discuss this vaccination.

Health Canada: National Advisory Committee on Immunization (NACI)
IMMUNIZATION RECOMMENDATIONS FORCOCHLEAR IMPLANT RECIPIENTS

Age at first dose and Immunization schedule:

2-6 months:

3 doses of pneumococcal conjugate vaccine (PCV7), 6-8 weeks apart
1 booster dose of PCV7 at 12-15 months
1 dose of pneumococcal polysaccharide vaccine (PPV23) at 2 years of age at least 8 weeks after the last dose of PCV7 **

7-11 months:

2 doses of PCV7, 6-8 weeks apart
1 booster dose of PCV7 at 12-15 months
1 dose of PPV23 at 2 years of age at least 8 weeks after the last dose of PCV7 **

12-23 months:

2 doses of PCV7, 6-8 weeks apart
1 dose of PPV23 at 2 years of age at least 8 weeks after the last dose of PCV7 **

24-59 months:

2 doses of PCV7 administered 8 weeks apart
1 dose of PPV23 at least 8 weeks after the second dose of PCV7 **

Individuals >= 5 years of age and above:

1 dose of PPV23**

Advisory Committee Statement of 1 April 2003, vol. 29, ACS-2-3

** PPV23 - Booster dose 5 years later is now recommended for all cochlear implant recipients

A few pictures....

Below is Dr. Morris, the surgeon who did Raymond's surgery, and soon-to-be my surgery.

This is excerpted from the Dalhousie University website - Dr. David P. Morris, BSc, MBBS, FRCS(Eng), FRCS(ORL-HNS), has a special interest in Otology, Implantation and Neurotology. He graduated from St. Bartholomew’s Hospital, London and, after basic surgical training in the south of England, he completed his Residency in Otolaryngology in Manchester. At the end of the Program, he was awarded the Royal Society of Medicine Gold Medal for his performance in the Intercollegiate Specialty Examination. He completed a year long Otology/Neurotology Fellowship in the Division of otolaryngology with Dr. Manohar Bance in December 2002 (Halifax, NS). After a brief return to the U.K., he came back to join the division in October, 2003.

Below is Dr. Morris' "fellow" assistant, Dr. Allan Ho, MBBS(UK), Dip.Health Research(Leeds), MRCS(UK), FRCS(ORL-HNS). Dr. Ho assisted with Raymond's surgery:

These pictures were taken at the Nova Scotia Hearing and Speech Centres in Halifax, NS - activation day of January 8, 2008:

Above picture is our audiologist of the Nova Scotia Cochlear Implant Program - Catherine Creaser, M.Sc. Aud (C).

Getting ready!!!

Watching the set-up....

Now connected to the computer - ready for programming the processer. This is called mapping.

The final result. Where the headpiece is, that is where the implant is - under the skin, embedded in his skull.

Raymond's current "update" - June 2008

Sorry for the delay in posting Raymond's progress, it's been so busy for the last while. I am happy to say he is doing extremely well, maybe alot more than we had expected.

At the last appointment with the audiologist, which was in February, she tested his hearing level in the booth and it was at 55%. His next appointment, April 2008, his hearing level increased to 71%, which is "awesome" in only 2 short months. He goes back again in July and I do expect his level will have increased again by then.

Instead of writing in paragraphs, I will outline his experiences since my last posting:

- sounds are getting clearer, crisper
- TV is starting to sound clearer
- starting to recognize words in songs without looking at words on paper
- hearing more bird sounds - recognizes its identification
- heard an owl hoot for the first time last weekend - can't even see the owl!!!
- talking much clearer - still need more work on this
- voice is still low - people are still asking him to raise his voice more
- he finally now can tune out some noises and sounds. My voice is one of them (at times) :(
- still having some difficulties with the T-coil. More adjusting needed soon.
- at the last appointment in April, the audiologist added a music program on the processor so he can hear the sound quality of music better and this part seems successful. He is happy as a bee.
- attended a dance one night, and when they turned on the music for the first time, Raymond nearly jumped out of his pants. It was loud because of the deaf crowd. Raymond and another CI user had to turn down the volume of their processor.
- can hear the ambulance, police and fire truck sirens far away without even seeing them. He can identify the difference in their sirens. With hearing aid, he could hear them close by and see them. He was not able to identify their sirens. Now he can without even seeing the truck or van.
- Raymond loves not having to wear an ear mold, ever again.
- he is very happy he can wear a cap, it fits over the headpiece beautifully.
- he has the PowerCel Slims and they only last about 4 to 5 hours, where it is supposed to last about 8 to 14 hours per battery. We believe it has something to do with the strength of programming and radio wave frequency, which drains the battery faster. We hope this will improve within time.

This one is one of my many favorites: Raymond was sitting out on the patio one morning reading the newspaper. The bird feeders are close by and he could hear all the birds chirping, communicating, etc. He came in to the house looking so exasperated and said to me, "My God, the birds are chirping so much!! They talk too much, I think worse than women!!" lol.... I had to laugh at that one, it was so hilarious. You just had to be there to see his expression.

When you first get your CI, don't be surprised to hear some negative feedback from others. Guaranteed, you will hear a couple. As well, don't be surprised at the jokes they tell you about your CI. Some of them can be a bit "too" excessive. Just laugh along with them - with the knowledge that they may not be well educated about the benefits of having the CI. This is one of the purposes why I am doing this blog, is to educate other deaf people, and as well as hearing people. I have received alot of feedback about this blog, and it is wonderful to hear them. Hearing folks now take their hearing for granted and have learned so much just from reading this blog. And it is great for the deaf community, as in my area, they are slowly accepting CIs which is 'awesome'!!!!

Your First Cochlear Implant Fitting

This is an interesting link about your first cochlear implant fitting. What I like about in here, is they stress the importance that everybody is "different" with their new CI and hear differently. It depends on the strength of your hearing loss, what you have heard in the past, etc. - it explains perfectly in the second paragraph. Feel free to read this if you wish:

http://www.bionicear.com/Your_Journey_to_Hearing/Adults/Getting/Your_FirstCochlear_Implant_Fitting.cfm?langid=1

Bits and Pieces

While I was surfing the net, I found a good detailed picture of how the CI is implanted just inside the base of your skull and electrodes in the cochlea. The brain is never touched during surgery. In this picture, the microphone is on the headpiece, that is on a particular brand of CI. However, Raymond's and soon-to-be-mine CI - the microphone is on the BTE (Behind the Ear) processor:

When you get your processor turned on, hearing strange sounds for the first time, you are given a kit to take home:

HARMONY ADULT KIT

Standard Items:
1 Harmony Processor Module
2 Headpieces
4 PowerCel Batteries
1 Standard Earhook
1 Direct Connect Earhook
1 Direct Connect Cable
1 Audio Interface Cable
1 PowerCel™ Charging System
1 PowerCel Charger Car Adapter
1 Little Things Wallet
1 Travel Case
1 Carrying Case

All three Base Colors: Beige; Silver Metallic; Dark Sienna Metallic - have a matching Headpiece and Blending Color cap and cover.

Raymond has chosen Forest Green, Burgundy, Deep Dark Purple (looks like black), and State Blue accents with the Silver Metallic base.

I have chosen Silver, Beige, Dark Sienna Metallic and Black with the Beige base.

There are two different battery sizes: PowerCel Slim and PowerCel Plus. PowerCel Slim battery provides up to an average of 14 hours between charges on the Harmony processor in the Power Economy mode. PowerCel Plus - same as above, but 24 hours:

Raymond has the PowerCel Slims and they only last 4 to 5 hours. I will expand on this on the next posting.

Components of a Cochlear Implant: Images tells all:

Implant: HiRes 90K® with HiFocus Electrode:

Sound Processor: Harmony (Behind the Ear) Sound Processor:

Two months post since activation day...

It's been two months since the big activation day and Raymond is doing extremely well, I am happy to report.

Raymond went for his second mapping session on January 25, 2008. This session was very short as the audiologist only just boosted the level up a bit - louder. All was going according to plan. However, one thing was noted that sounds were being cut off each time Raymond moved his head. It was noted the wire connected to the processor was very loose. The audiologist said she would order another new processor and it would be here for his next mapping session in two weeks.

The switch on processor is the same as the first time in January, start small at time and gradually increase the loudness as the weeks goes by until his next appointment. The volume control remains at 12 noon position, always.

Between January 25th to February 8th, Raymond still continued to hear new sounds and recognize them quickly later once he knew what they were. One thing he heard for the "first" time in his life was birds communicating to one another. We have a few bird feeders in front of our living room window and he went out one day to refill them. The chickadees were around the feeders and they flew away to nearby trees when Raymond arrived. He could hear their bird sounds from one tree to another, like they were communicating. This feeling gave him the goosebumps! Reason is he was never able to hear small bird sounds clearly before, and he was able to recognize where the sounds were coming from. This is an amazing feat for Raymond.

Sounds that were bothersome to Raymond in January after the activation date, has become like "nothing" to him. He is used to them now and has the ability to tune them out. One of them is newspaper :)

For Christmas, I gave Raymond two children's "Read-a-long" books with CD and he's been practicing listening to the CD and reading the story along at the same time. This really helps he finds. Another thing he has been doing is listening to CD music on our laptop and the lyrics pulled up from the Internet to read along. He listens and looks away and then looks back at the lyrics. Works for him and a good listening skill practice. Raymond has always been able to listen to music, so he is looking forward to hearing music again once he has re-learned the skills again.

On February 8, 2008, Raymond went for his third mapping session. The audiologist placed him in a booth to determine how close he was at their CI "expectation" level - and he is getting close or improving well. It came to 55%. The audiologist is very pleased with Raymond's progress.

Got his processor replaced with a new one. During this appointment, even after the processor was changed, the sounds were still being cut off. It is noted that the skin on his skull is thick, so the audiologist had to strengthen the radio frequency waves stronger to be able to go through to the implant. Sure enough, it worked since. Also, she changed the magnetic on the headpiece to a stronger strength.

The switch on the processor now has been changed:

1) First switch is normal sounds all around. This time around, he can use the volume control.

2) Second switch is for removing background noises. For example, in a restaurant, crowds, in the malls, at an assembly, or even at a party, Raymond is able to turn the switch to number 2 and block out the background and hear only sounds around him. He really likes this one as it makes the conversation flow better.

3) Third switch is for T/M. This is the T for listening to the phone and for loop-system. This one needs to be worked on as it is not quite the same as it is on hearing aids. This will be discussed at the next mapping appointment. This is what is happening now, for example in church - the priest uses the microphone for the loop-system, and Raymond would use the T-switch to hear only the priest. But with the CI - the T switch is the T/M = T-coil & Microphone which allows Raymond to hear the priest directly but also hears the congregation as well. We repeat things after a priest says something, Raymond would only hear the priest say something but he would also hear the congregation repeat. He is not too pleased with this part.

Even at home, we have a loop-system, where we can put our hearing aids on to 'T' to hear only directly the TV, and nothing else. But with Raymond's CI, he is hearing the TV directly and also hears my voice as well when I talk to him. So that is something we will be discussing with the audiologist at our next appointment. Maybe that is normal, I am not sure. Will find out more later.

Since February 8th, which was the third mapping appointment, Raymond has been consistently working on his listening skills with the read-a-long books, CD music and the radio. The radio is now starting to become clearer and clearer. It is not clear clear yet, but still working on it. It takes time, as it can take up to 3 months to a year...depends on your skills.

One day, he was doing some work outside and decided to use the outdoor water hose for something. He forgot to turn it off and came into the house. He heard "something" running and it sounded like water to him. He checked the bathroom, nothing was running, so he figured I was doing the wash, so he checked, the washer was not running. He became scared as we had a flood in the basement in the past and he thought it was happening again. So he went downstairs to check it out. The noise became louder as he went into the room. Looked around, and then looked up.... the pipes that leads to the outside water tap, the water was running through the pipe to outside :) He forgot to turn it off and he was able to hear that from the main floor. Amazing, eh?

I have one pro and one con about Raymond's CI:

Pro: It is "wonderful" to be able to call his name and he can respond quickly. No more banging my feet on the floor or lightly hitting my hands on the table to get his attention (the deaf way for those who wonder why).

Con: Before the CI, when Raymond did not have his hearing aid on, he was still able to hear some things and I was able to call his name and he would respond. Now, with the CI, he is completely 100% deaf because of the electrodes damaging the remaining of the hairs in the cochlea. He can no longer hear me calling his name, or he can't hear the phone ring anymore. That is gone now. I keep forgetting that and when I call his name, he just keeps walking away or does not respond, argh!

I have to share something with you. Something happened to Raymond yesterday at a RV Show and it was so hilarious! I laughed myself to tears. At the RV show, he was looking at a flat TV that was hooked up on the outside trailer wall. He was impressed with it and was wondering how it was hooked up and bent over to look in the back of the TV. You know those handles by the door you grab on to when entering the trailer. This handle was a long extended one and it is aluminum/metal. While Raymond bent over to look at the back of the TV, the magnetic headpiece went "whoosh" and attached itself to the handle. Raymond knew something was wrong as he went completely deaf because the magnetic was taken off from the implant. The processor was still on his ear so you could see this wire and headpiece over on the handle. Man, it was quite the sight to see. I laughed so hard!! :)

In closing, overall, there is only one thing Raymond still has struggles with is the clarity of voices, etc.,... it is becoming clearer each time, but not clear-clear as I mentioned above. This will improve within time and with patience.

Next appointment is in April.

Most Important Prerequisites.....

In order to be qualified to go for the cochlear implant assessment, it is very important that you have the following three:

1) Have always worn a hearing aid, I mean always - like all your life and wear it full time and still do.
2) Have a speech pattern already developed.
3) No abnormalities inside your middle ear or cochlea.