Saturday, August 8, 2009

I might get CI in 3-5 years, need to learn more! My thoughts posted here.

Ive been thinking to myself about my future plans. There's still so much I need to learn about CI and so much more I need to research. Ive read many CI blogs and most with CI have a positive experience. But I just got done reading her negetive experience.  Although she did hear better with CI, she experienced complications with her CI and has stopped wearing her CI. She started wearing it again but is still experiencing problems and has stopped again. She also is sad to lose her residual hearing. I hope she can have her problems addressed and be happy with CI again. I do wish her well.

You may ask what happened to my plans for stem cells? The plan is still in action but no one yet knows when human clinical trials will begin. I plan to get a CI consultation in 2 years or so and if CI technology in 3-5 years can meet all my requirements and stem cells isn't around the corner by then, ill get one ear implanted and save the other one unless I lose all hearing in that ear.

Right now I have a 70-75% chance of improvement with CI over what my HAs can deliver. That comparsion was made with my current HAs programmed for maximum gains. I definately plan to try different HAs before getting CI. It makes me sad to see some people skip this important step. What if better HAs improve your speech from 20% to 70% or lets you hear 0db at several frequencies? Some of you do have enough residual hearing to accomplish just that.

Ive checked previous audiograms and my hearing has gotten worse. Ill post all my audiograms in another thread very soon. This is very important information for myself and for everyone reading to learn. I expect my hearing to slowly get worse and I might not hear above 500Hz a few years from now. In fact my 2002 audiogram shows no residual hearing above 500Hz but more recent audiograms place my loss in the 110-120db range above 500Hz. I will need a TEN test for cochlear dead regions.

Cochlear dead regions deserves it's own thread. But from what ive read, it's very interesting. A dead region is where you have no hair cells left and no residual hearing. You could still respond on the audiogram but the response is false and in fact arises from off-frequency stimulation. For example, a 120db stimulus can be heard by me as high as 2000Hz. But am I really hearing 2000Hz or are my hair cells at perhaps 500Hz responding? The piano thud test shows my hearing is "good" to 900Hz and goes downhill fast and ends at 1200Hz. Speech tests show pratically no benefit above 500Hz, any hearing above 500Hz doesn't really improve my speech score for some reason. Ill post about that in detail on another thread.

Ive been told that a CI should and probably will significantly benefit me today. My math places around a 3 out of 4 chance of hearing better with CI based on how much residual unaided hearing I have on a recent audiogram. You see, the more residual hearing a person has, the more benefit he will get from HAs. If I can hear 50db aided at a certain frequency and someone has 30db more residual hearing(say 90db vs. 120db) that person could be hearing 20db and not only that, the quality would improve since there's alot more surviving hair cells! There's some people who got CI who's audiograms I wish I had, id hear great with HAs with that much residual hearing. Ill have to wait for stem cells to improve my hearing to where their hearing currently is.

Hopefully CI technology gets to the point in 3-5 years where there's at least 90% chance ill hear better than with HAs. I am not comfortable with today's 70-75% odds. My friend says AB is working on 32 channels. We have seen 22 channel CIs for around 20 years now, about time for more channels! Ill be alot more interested if one of those CI companies can come out with 32 or more channels! This is very important for pitch perception but helps improve quality and even quantity of sounds!

There's alot of conditions that need to be met regarding CI.

1. I would like to hear better than 30db in the lows(125-500Hz) better than 40db in the mids(500-2000Hz) and better than 50db in the highs(2000-6000Hz+) and I would like to hear equal or better than my HAs at every frequency, even 125Hz and 250Hz! Today's CI technology stands a good chance of meeting my conditions in the mids and highs but a poor chance of just matching what I can hear with HAs in the lows. Maybe tomorrow's CI technology can at least match what I hear with HAs in the lows?

2. I would like to hear 100Hz or better all the way up to 6000Hz or better. For this, ill need a long electrode array inserted deep towards the apex of the cochlea. The low frequencies are the most important since most of the sounds and speech comes from the lows. I am simply curious what the highs sound like but regardless, getting to 6000Hz and better than 50db sounds realistic. The highs aren't of much importance from what my hearing friends say.

3. I want a 40% improvement in speech scores on a HINT-Q test or some other standard test. If I score 30% with my HAs, id like to reach at least 70% with CI. If I can score 40% or better with HAs, I will leave well enough alone even if I am a "borderline" candidate due to very loose CI criteria.

4. Id like to hear aided with CI comparable to what a severely deaf person hears aided with HAs and comparable to what a mildly HOH person hears unaided. Id of course like to hear better than what I and other profoundly deaf hear with the best HAs set to maximum gains.

5. I will need to be approved and financed by insurance, I can't afford the $50,000+ cost myself and even if I could, id be saving that for stuff such as a house, life saving surgery, retirement and even stem cells.

6. Id need to know what kind of risk id be taking by undergoing CI surgery. Id also need to know what complications can occur and the percent odds of them happening to me.

7. Id need to find an expert CI surgeon, team and audiologist to ensure the best possible CI results and to hopefully hear better than what I hear with HAs. Id want to talk in person to others who got CI and determine objectively how well they hear. Ill tell them to turn around and ill say sentences and see if they hear/understand. Ill also play tones and see if they can hear them further than I can.

8. Id be interested in the surgeon who has set records with CI, like he did with this lady who hears from -5 to 10db with her CI! He must have done everything right for her to get a record breaking result!

9. The audiologist will need to know how to correctly program/map my CI. He/she will need to work with me and let me see all the numbers/results entered. I will want to learn much about mapping a CI so I can help the audiologist map my own CI. I want the best possible thresholds and large dynamic ranges. 80% of a CI is the mapping and there's thousands of ways to map a CI, it's way more complicated than HAs.

10. I will need to learn more about CIs, what factors give good/bad results and see all the numbers/audiograms so I can compare and learn what results I can expect for myself. Those of you blogging your CI experience, please include all information/facts. Your subjective experience only tells half the story. How much residual hearing did you have before CI? Why were you not getting enough benefit from HAs? Did you try the best HAs with maximum gains? How well were you aided in the soundfield and what was your speech scores? How well do you hear with CI and how much, if any residual hearing did you keep per your new audiogram?

11. Stem cells is the wildcard. A CI will damage my hearing and cochlea and make it harder to get good results with stem cells in the far future. It would suck to be left out of stem cells for a long time in the implanted ear. I know the saying "the time is to hear now" but what if it means you end up not hearing in the future? I expect CI to be obsolete and no longer made/supported once stem cells takes off.

12. I will be paying close attention to the progress of stem cells all along the way. Ive seen a website in China that claims they can treat a variety of conditions including deafness today! What if in 3-5 years thousands of people travel overseas to become less deaf or HOH with stem cells and hear way better than CI with their HAs using their much improved residual hearing? Ive been thinking I could risk one ear with stem cells and if this doesn't work out then ill get a CI in that ear and wait for stem cell technology to mature. Then ill get stem cells in my non implanted ear while waiting for stem cells to make it possible to repair the damage CI does and improve my hearing enough in the CI ear too.

13. I am particularly curious why CI candidacy criteria is so loose and why they are/have implanted those with only a moderate hearing loss(such as 50db at 250Hz) a such person would still hear some sounds unaided that would be destroyed with a CI. I have a 70db loss at 250Hz and even I am worried about losing this residual hearing and hearing worse in the low frequencies. Why would someone who with the right HAs can hear 0-10db aided in several frequencies want to hear only 25-40db with CI? If they are that interested in hearing the highs, surely transposition would work?

14. I will try every powerful HA out there, especially the ones with transposition. I will do my best to make HAs work since CI is a last resort. My audiologist agrees that too many people buy into the CI hype and are too quick to give up on HAs that could be benefitting them! I know someone who scored 20% speech which improved to 70% when he tried different HAs! The longer you stick to HAs, the better CI technology will be when you finally get CI and if you can wait long enough, you can get stem cells!

That's all for now. I will keep blogging as I learn more. Feel free to comment and ill respond.

update(Nov 22) I spoke too soon about thinking about CI in 3-5 years. Stem cell technology has advanced faster than I previously thought and ill be getting my chance to get stem cells in less than 3-5 years. The experts predicting a 20+ timeframe for stem cells were wrong. I now see that stem cells for deafness has recently become available, making CI a moot point now and especially in 3-5 years. Hypothetically, if stem cell technology never existed then yea id get CI when CI technology improved some more. But now CI is old news and will quickly fade away.


  1. Hi, thanks for commenting on my blog. I have alt of stuff going on in my life right now apart fromthe CI so i dont have much time to spend blogging.

    I don't have an exact comparison with me for residual hearing, but it looked within 5dB. It does feel slightly less but not much. I still have stereo sound when I am unaided, you know the loud bangs and crashes noises.

    Your questions re CIs are very valid. You have to remember that when you are reading CI accounts from other countries the healthcare system may not allow a great deal of choice insurgeon and type of CI.

    The number of channels is also not a fair comparison, its what is done with the channels. My Medel only has 12, and at the moment I only have 11 turned on. But with those 12 I can appreciate all the frequencies.

    The skill of the surgeon and team is so important, you are very right there. I was pleased to have an expert do mine, excellent care at Sunnybrook.

    Take your time to find out more til you are comfortable with the idea. I know you love numbers, but so much of a CI is subjective too. Try to see beyond the figures.

  2. If you end up getting the CI's before I do, I'll definitely rely upon you and your blog for an in depth comparison of before and after. You have the advantage of doing your homework and gathering the "before" data, and I'm sure you'll do just fine with collecting the "after" data. It'll serve as a wealth of information.

  3. hi Dude

    In case you miss my earlier mail, please check this websites out.

    I put 2 and 2 together and the message is shouting at me . The cord blood coy is obviously embarking on human trials.

    What do you think ?

    See the 1st link on the cord blood coy and the 2nd link on where the idea might have come from:

  4. hi dude

    are you alright ? did not hear from you for a week already.

  5. I edited my post with an update regarding stem cells.