CI - advice?
- Thread starter shezzbeav
- Start date
overthepond
New Member
- Joined
- Jun 3, 2008
- Messages
- 2,078
- Reaction score
- 0
I have recently been implanted with Nucleus freedom, I cannot tell you the difference at the moment as i am not switched on yet. Ok But can tell you what i went through, Bearing in mind this was in UK.
My left is 120 db no high frequency and right is 95 again no high frequency.
I was transfered to new area, new doctor, new audiologist (previous audiology refused point blank to provide new HA hence change of address and area) When i had my hearing test at the new hospital, i was surprised that my Left had lost more hearing (was 80 -85 db) the new audiologist gave me new aids Sienmens, I went away and tried them... they were no good and at the same time i went to see my new ENT... he said to me have you thought about CI. So i agreed to go for it.
In Jan I was refered to CI centre, they gave me hearing aids trials (i tried Oction, Uniton, Phonak) all no good. This is the norm.
During assessments, you would need to do lipreading/voice test, lipreading only and voice only so they can see how you cope with hearing aids and see how much can you benifit from getting the CI. We had to meet the CI critera.
They will also do MRI/CT scan to see what's your Cochlear looks like, If it's occisfied the lesser chance of you getting them as the surgery would be difficult but Surgeons always will try and get some of the coil in. It's common in menigitis people, or people with deformed ear. Mine was clear and i have all of the electrodes in.
I had ABR (auditory Brain response) its painless and you'll need to be very still/quiet during those time they insert very fine tube into your ear canal and stick 3 electrodes on your hairline. It to tell how much your auditory Nerve/brain responses to the sounds... to be honest it was so weird (soft buzzing sounds) as i "heard" for the first time in my head not at the ear drums!
They may do Balance test as well, I didn't go through this as i don't have problem with my balance.
We would have meeting with other CI users and learn from their experince. I didn't find those helpful because they were late deafen people who already know what sounds are like where as i was born deaf and never heard bird singing... there is huge difference. When i am switched on and is settled in my new life as bionic woman i will make this difference as i would do the talks to help BORN deaf people to learn about my experinces.
During the meeting we also had look and try the processor and look at different implants, We had to choose from Advanced bionics, Cochlear, Med-El. I knew i wouldn't choose Med-El as they weren't around long as the other two and not sure of their reliablity also the processor looked unattractive and straight, and i would loose that remote in a flash or my dog would eat it before i could find it!!. I tried both AB and cochlear.. boy that was hard... did some research.. I chose Cochlear because of it's reliablity, comfort, an extra program and they are easily upgraded even you still have same implant. My Friend had her implant for 11 years and had upgraded processor twice.
I also had the menigitis jab.
As I was under NHS, the surgeon and the Primary care trust had to decide if the CI would be good for me and pay for it. it took about 2 months for them to decide!
The surgery itself, I was under GA for 4 hours and were completely painless, I didn't have any problems with balance, sickness, dizziness, nothing at all i was sitting on my bed straight after being brought back to my room. I was in hosp over night (standard in UK) and went home next morning after xray and with a bag of pills (anti bios, anti inflam, and pain killers)
Recently had my wound checked and xrays checked, the surgeon is very pleased and my scar is barely noticeable! I had it done nearly 4 weeks ago.
My advice to you, Talk to CI users and learn from them, research research research..... ALL the Best of luck.
My left is 120 db no high frequency and right is 95 again no high frequency.
I was transfered to new area, new doctor, new audiologist (previous audiology refused point blank to provide new HA hence change of address and area) When i had my hearing test at the new hospital, i was surprised that my Left had lost more hearing (was 80 -85 db) the new audiologist gave me new aids Sienmens, I went away and tried them... they were no good and at the same time i went to see my new ENT... he said to me have you thought about CI. So i agreed to go for it.
In Jan I was refered to CI centre, they gave me hearing aids trials (i tried Oction, Uniton, Phonak) all no good. This is the norm.
During assessments, you would need to do lipreading/voice test, lipreading only and voice only so they can see how you cope with hearing aids and see how much can you benifit from getting the CI. We had to meet the CI critera.
They will also do MRI/CT scan to see what's your Cochlear looks like, If it's occisfied the lesser chance of you getting them as the surgery would be difficult but Surgeons always will try and get some of the coil in. It's common in menigitis people, or people with deformed ear. Mine was clear and i have all of the electrodes in.
I had ABR (auditory Brain response) its painless and you'll need to be very still/quiet during those time they insert very fine tube into your ear canal and stick 3 electrodes on your hairline. It to tell how much your auditory Nerve/brain responses to the sounds... to be honest it was so weird (soft buzzing sounds) as i "heard" for the first time in my head not at the ear drums!
They may do Balance test as well, I didn't go through this as i don't have problem with my balance.
We would have meeting with other CI users and learn from their experince. I didn't find those helpful because they were late deafen people who already know what sounds are like where as i was born deaf and never heard bird singing... there is huge difference. When i am switched on and is settled in my new life as bionic woman i will make this difference as i would do the talks to help BORN deaf people to learn about my experinces.
During the meeting we also had look and try the processor and look at different implants, We had to choose from Advanced bionics, Cochlear, Med-El. I knew i wouldn't choose Med-El as they weren't around long as the other two and not sure of their reliablity also the processor looked unattractive and straight, and i would loose that remote in a flash or my dog would eat it before i could find it!!. I tried both AB and cochlear.. boy that was hard... did some research.. I chose Cochlear because of it's reliablity, comfort, an extra program and they are easily upgraded even you still have same implant. My Friend had her implant for 11 years and had upgraded processor twice.
I also had the menigitis jab.
As I was under NHS, the surgeon and the Primary care trust had to decide if the CI would be good for me and pay for it. it took about 2 months for them to decide!
The surgery itself, I was under GA for 4 hours and were completely painless, I didn't have any problems with balance, sickness, dizziness, nothing at all i was sitting on my bed straight after being brought back to my room. I was in hosp over night (standard in UK) and went home next morning after xray and with a bag of pills (anti bios, anti inflam, and pain killers)
Recently had my wound checked and xrays checked, the surgeon is very pleased and my scar is barely noticeable! I had it done nearly 4 weeks ago.
My advice to you, Talk to CI users and learn from them, research research research..... ALL the Best of luck.
I agree with overthepond to talk to CI users. You really need to discuss it in person with them. It helps to see the reaction to sound and how they function. I have had my bilateral CIs for over a year. It took 5 years to make the choice to have surgery and then a year to get insurance approval.
There are many blogs posted that share their experiences. Just google cochlear implant blogs. Just remember each person has a different experience with CIs. Just because I have an overall comprehension of 96% a year later does not mean you will. It takes a lot of work.
There are many blogs posted that share their experiences. Just google cochlear implant blogs. Just remember each person has a different experience with CIs. Just because I have an overall comprehension of 96% a year later does not mean you will. It takes a lot of work.
R2D2
New Member
- Joined
- Dec 15, 2005
- Messages
- 2,605
- Reaction score
- 1
Hi Shevbeev,
I notice you are in Australia.
My process was quite similar to Overthepond's. You will likely go through a trial with hearing aids first to see if you can get a satisfactory fit without going the whole hog for a CI. Then speech testing with hearing aids and with lipreading. The surgeon will likely schedule an MRI scan to ensure the inner ear structure is viable for a CI and also to use as information for planning the surgery. You may also have a balance test as well.
Only then do you get approval for a CI. If you have private hospital cover then you will likely get a date for surgery within 3 months, I'm in Sydney and it took 6 weeks for both ears. You will have to pay the anaesthetist fee. Mine was $800 and I got some of that back through medicare.
If you are going under medicare only then the waiting list can be quite long for adults 18 months to 3 years. However you won't have to pay anything. If Brisbane has a very long waiting list then you might consider taking out private health cover if you can afford it and wait out the 12 month pre-existing condition period. After that you are covered by law.
If you are in Australia then you will likely get the Cochlear Freedom. I don't think AB or Med-El operate here.
My surgery lasted 2 hours and I stayed overnight in the hospital before going home. You will be given a strong painkiller after the surgery but when you get sent home, you will likely be just on panadol. The pain varies from individual to individual. However by a week post surgery, it should have improved a lot.
It took 3 weeks to get activated or have the implant switched on. At first it sounded terrible, but I had done my research and knew to expect that. Then from there it just kept getting better and better and passed my performance with hearing aids by 12 weeks. It was very successful for me but success depends on a number of factors the biggest being your audiological background prior to the implant. Not everyone does well with the CI.
I notice you are in Australia.
My process was quite similar to Overthepond's. You will likely go through a trial with hearing aids first to see if you can get a satisfactory fit without going the whole hog for a CI. Then speech testing with hearing aids and with lipreading. The surgeon will likely schedule an MRI scan to ensure the inner ear structure is viable for a CI and also to use as information for planning the surgery. You may also have a balance test as well.
Only then do you get approval for a CI. If you have private hospital cover then you will likely get a date for surgery within 3 months, I'm in Sydney and it took 6 weeks for both ears. You will have to pay the anaesthetist fee. Mine was $800 and I got some of that back through medicare.
If you are going under medicare only then the waiting list can be quite long for adults 18 months to 3 years. However you won't have to pay anything. If Brisbane has a very long waiting list then you might consider taking out private health cover if you can afford it and wait out the 12 month pre-existing condition period. After that you are covered by law.
If you are in Australia then you will likely get the Cochlear Freedom. I don't think AB or Med-El operate here.
My surgery lasted 2 hours and I stayed overnight in the hospital before going home. You will be given a strong painkiller after the surgery but when you get sent home, you will likely be just on panadol. The pain varies from individual to individual. However by a week post surgery, it should have improved a lot.
It took 3 weeks to get activated or have the implant switched on. At first it sounded terrible, but I had done my research and knew to expect that. Then from there it just kept getting better and better and passed my performance with hearing aids by 12 weeks. It was very successful for me but success depends on a number of factors the biggest being your audiological background prior to the implant. Not everyone does well with the CI.
Care to share why? If your right ear is "dead" or you have significent tintinuas or recruitment, I totally would go for it without even thinking about it.
It might be worth it to try one of the newer digital aids....or power aids. Those might be the answer. It's just so hard to tell, since audilogy is such an inexact science. Whatever your decision, good luck.
- Joined
- Mar 13, 2003
- Messages
- 1,282
- Reaction score
- 1
Wow, thanks everyone. Your stories have been very helpful.
deafdyke - According to my last audiogram, I have no hearing in my right ear, and all of my previous hearing aids fitted for my right ear haven't worked.
I have an appointment with Australian Hearing on 24th September to get a new hearing test and to determine which hearing aids I will be getting. I also will be using that appointment to talk with the audiologist about the possibility of getting a CI.
deafdyke - According to my last audiogram, I have no hearing in my right ear, and all of my previous hearing aids fitted for my right ear haven't worked.
I have an appointment with Australian Hearing on 24th September to get a new hearing test and to determine which hearing aids I will be getting. I also will be using that appointment to talk with the audiologist about the possibility of getting a CI.
Miss-Delectable
New Member
- Joined
- Apr 18, 2004
- Messages
- 17,164
- Reaction score
- 6
Talk to the Audie and ask her to make a referral to CI Clinic on your behalf. That way you can ask the doctors there more questions and undergo tests to determine whether you're a good candidate.
I did all this, but in the end, decided not to go for the procedure. Still waiting for the day Hybrid CI will be available.
I did all this, but in the end, decided not to go for the procedure. Still waiting for the day Hybrid CI will be available.
R2D2
New Member
- Joined
- Dec 15, 2005
- Messages
- 2,605
- Reaction score
- 1
Australian Hearing deal primarily with hearing aids, so if you were going to investigate a CI together with trialling HAs, they would have to refer you on.
If I was in your shoes, I would try and locate an audiologist who does both hearing aids and CIs so that you don't waste time seeing two different professionals. My audie does both and many of her clients are HA only. Most CI audiologists are trained to fit hearing aids anyway, they have to be as trialling hearing aids is part of the approval process for a CI.
overthepond
New Member
- Joined
- Jun 3, 2008
- Messages
- 2,078
- Reaction score
- 0
I am with R2D2, I was with normal audiology and the ENT at the same hospital refered me to the CI centre, haven't seen them since as the CI centre sorts out my Hearing aid aswell... if i were you I'd book a visit to ENT or similar who does the referals, ASAP to avoid long process.
It may differ from here in UK to Austraila so it's worth giving my advice!
It may differ from here in UK to Austraila so it's worth giving my advice!
In that case Shezz, it seems to be a no-brainer! If hearing aids have clearly and consistantly not worked for you, on that side then SO go for it. You have nothing to lose. At least it could help you with enviomental sounds or you could get some word comprehension, which would help with the bigger picture (ie it would work together with your ha to increase word/sentence comprehension)