Monday 23 June 2008

Feedback from Others....

On the long weekend in May, Raymond and I went to the deaf bowling tournament as fans in Halifax, NS, where we had the greatest opportunity to meet four wonderful people who had the CI. For me, it was just awesome just to chat with them and hearing about their experiences. It was a great opportunity for me to ask them alot of questions. It left me feeling satisfied and answered a few of my unanswered questions. All of them had different experiences, so it is a reality that the CI works differently for everybody. That is what the doctor wanted me to have that picture in my mind, and not to expect to hear as well as Raymond does.

After doing talking with them, I think it is really important for CI users to meet people who will have the CI surgery - this is SO much better than reading CI materials, etc. By talking to them, you are hearing real life stories. Thus, another reason why I am doing this blog. It is honest and has no hidden agendas.

If my CI surgery turns out not to be successful as I had expected it to be, I will be honest and tell you in this blog.

If you are going for the CI surgery, try to grab that opportunity to meet other CI users. Ask your audiologist if she/he has a list of people you could meet. My audiologist, Cathy, has already asked me and Raymond if others could contact us and we gladly told her that she could.

If there is a CI support group in your community, join it! It is the best place to receive the good and bad feedback. This will help you to make your decision to have the surgery or not. Try not to listen to all the negativity too much, as everybody receive different results from their surgery. It is based on their hearing skills growing up, etc., and also it is based on how your brain will receive it...so nobody is the same, I stress that importance.

As well, speaking to CI users, you may get some ideas that you have never thought of before. Like for example, one person didn't know that it is good to obtain a children's book with a CD - a "read-a-long" book for you to listen to and practice your listening skills. It is good to share best practices with each other.

Most important of all, if you are involved with the deaf community, try not to listen to their negativity as well. Ignore it and put it aside, as it is YOUR life, not theirs. Some deaf people will try to stop you from having the CI surgery. Some will make some comments to you, some will say you are no longer a part of the deaf community as you will not be deaf anymore. It is sad to hear this. Some deaf will give you great support, and congratulate you. Please don't be afraid of them. It is your life and your hearing. You heard well before and you are losing what you already have, so it is natural for you to want to hear like you did in the past, or maybe even better than before. You enjoy hearing things and you miss these sounds. Some deaf people don't understand this because they have never "heard" before. Hard of hearing people do understand.

One thing I can tell you, is we will never lose our identity. Raymond and I think of ourselves as deaf and hard of hearing, and that will always remain. The CI only helps us to hear a bit better than before, that's all, it does not change us into a hearing person.

For those who are new CI users, you might end up having people - friends or family - sneak up behind you and "test" you by calling your name or whatnot and then they go around telling everybody the "CI is not working at all, it is a piece of sh*t" or whatever they say. This is not fair and it is considered rude. That's just my opinion, it is rude! If it is in a crowd, naturally, we will NOT hear you...we might hear something, but not know what it is immediately. It is the same for hearing people too, and I am sure some of you will agree. We all have the tendency to tune out things and focus on what we are doing. And if it is in a quiet setting, then we will hear you, however, we might not respond to you right away. The CI does not make us into a 100% hearing person!! Would be nice, but unfortunately not.

People need to understand that CI is a tool, the same as hearing aids are a tool. They are only objects to help us to hear better, to improve the quality of our life. Same as glasses....how would you feel if I told you that you don't need glasses. You would have a fit saying that you need glasses to see things. It is the same with the cochlear implant.

How's that for the "thought" of the day for you :)

Friday 20 June 2008

Cheryl's Update

I saw Dr. Morris on May 15, 2008 for the final approval to have the surgery or not. I had confidence that he was going to say "yes" and he did!

During this appointment, he had informed me that my CT-Scan looked good, as well as my balance test I had done in 2007. He was happy that my balance "spun", saying, "That's good!!" That part I will never understand as I didn't like the balance test too much. Remember, everybody is different. Raymond had no problems and he went directly to Tim Horton's for coffee right after his test, where it took me nearly 2 hours to recover...

What I like about Dr. Morris is his honesty. He had a little bit of a concern that I would expect to be successful as Raymond's cochlear implantation. I told him that I do not expect to be up to Raymond's hearing level and I was aware that Raymond has a higher hearing level than I do so said for him not to worry about it. The audiologist, Cathy, who was with us during this appointment, told Dr. Morris that I was very aware of these facts. After hearing this, Dr. Morris was satisfied. For me, the purpose of the CI, is to remove the frustrations in my life, and as well for my family, friends and co-workers. The CI will help me to hear sounds better, like the phone ringing, the door-bell or knocking of door, someone calling my name, etc. As well, the one-on-one conversations would be smoother. This is just to name a few.

For me, what I hope is to be able to hear as well as I did when I was a teenager and in my 20's. Even close to that level or a bit more than that, I will be happy. I will never have a perfect hearing, no, but just to remove the frustrations and the dullness, that I hope to remove.

Dr. Morris said that my CI might end up surprising everybody and exceed their expectations. Only time will tell.

Lastly, he goes over the surgery, what can happen, etc. Then I signed some papers, and he filled out my work medical leave papers. Date of surgery was provided to me during this appointment and it is July 3, 2008!!

On July 2, I have an appointment for the pre-admission testing at 12:45 pm. This is for blood work, lots of questions - such as allergies, etc, what pills I take, how much I weigh (must I tell the truth for this one???? lol). During this appointment, I meet with the anesthesiologist, to discuss what they will use to put me to sleep. I will ensure they give me a gravol before going to sleep, as this will reduce the nausea after the surgery. Anything to reduce anything, I will take.

As of today, I have 10 more sleeps to the actual surgery day!!!! Yay.... Time flies!!!!

Being off work how long, it varies for everybody. They informed me that I will be off work for 2 weeks for sure, but expect to be off work until activation day, so that is nearly a month after the surgery. Raymond had balance problems for nearly 3 weeks and gradually disappeared a month after his surgery. So after seeing Raymond go through this and after talking to others who had the CI, all advised me it is a good idea to be off longer than two weeks. We'll see how I do. I will keep you guys updated after my surgery, for sure.

Man, I am really excited about this. The timing is perfect and I am so ready for this!! All I ask of you guys is to pray for me on my surgery day (July 3), and pray for God to guide the doctor's hands and for the doctor to use the best of his knowledge/skills. Thanks! :)

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

Saturday 7 June 2008

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.

Sunday 1 June 2008

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: