Thursday, July 2, 2009

Second CI for Amanda??

Today we had an appointment with Amanda's CI surgeon to discuss the possibility for a second implant. It took us an hour to drive to LA and three hours to drive home and the bottom line is that today was a bit of a disappointment.

Amanda has wanted a second CI before she even got her first one a year ago this month. There was only a brief period of time during her recovery period and before activation that she had to think twice about going through it again. But that quickly subsided and she was right back wanting the second CI again.

In our meeting with her ENT today, he was unconvinced that a second CI would benefit her speech production, which he said was the reason second implantations are performed.

We had brought documentation from her school audiologist and speech pathologist (who have both known Amanda since she started at the school at age 3 and was a student in my class) showing that she had made considerable progress in the areas of speech and listening since her CI.

Nothing about Amanda has ever followed a typical pattern. And even though she only has three electrodes active, has facial stimulation if she turns the volume past 11:00 and can't hear her own voice...Amanda is thrilled with her cochlear implant. It has made a huge difference in her life.

She now watches television with the volume on, has favorite songs on her iPod (she especially likes drums), she can hear people talk, buzzers, bells, helicopters, traffic, her dog, Goldy's dog tags, dogs barking and many other environmental sounds although she can't always localize them.


In addition to her increasing ability to hear and identify environmental sounds, she has made tremendous gains in closed set speech detection, identification, discrimination and comprehension. And her speech production when combined with visual cues has improved as well. If something is written, she can read it with a fair amount of intelligibility and combining auditory with visual cues (lipreading & visual phonics) she can correct her speech production errors.

We believe Amanda deserves a chance to see if with a second implant she can have more electrodes active, be able to hear low frequency sounds, hear her own voice, and experience less facial stim. This will increase the chances that she will be able to make even more progress with her speech and listening abilities and pick up other environmental sounds.

The plan right now is for his audiologists to do a series of tests before he decides to do the second surgery. We will be contacted for an appointment and go from there.

If anyone has any wise words of wisdom we'd be happy to hear them.

7 comments:

Sam said...

I, too, believe Amanda deserves that chance and I pray everyday she gets it. Good luck!

Carol Olson said...

Hi
My name is Carol and I am from Idaho. I just had my second CI surgery on June 11. I am still healing and will be "hooked up" (sorry for the choice of words) in mid-July. My medical professionals were all for this second surgery. There is a lot of evidence that hearing bi-laterly makes a huge difference in quality of life. I am a school teacher and teaching with one implant has sometimes been difficult. I have high hopes for this coming school year. I hope Amanda can do this and good luck to you all. You can email me a pelaroja05@hotmail.com if you would like to know how things go after my hook up appt.

Anonymous said...

wow....A decided to have second CI already! I also support her as I know hearing in both ears is wonderful! However, I can give some opinions which are perhaps for disadvantages for myself, not A.

I want to have another new ear too, hear in both ears in someday! However, I should be faced many problems if I was bilateral implants, should be more stressful such as:

1) Have to buy two processors for ears(over HK$120000) in the future. Each processor is about HK$60000(without any CI cables). Want to hear in both ears, but need to buy two cables? quite too expensive for me.

2) Thinking about myself, my speech is never improving up, coz Speaking Cantonese is difficult than speaking English. I never speak with high voices, but I can understand high or low voices in my brain. Just never speak out as well.

3) If my salary is very low, perhaps cannot buy new processor for another ear. I will not mind to wear old and new processors for ears, maybe will feel different, likes implant and aid feeling.

4) I know America Deaf culture is better than HK mostly, maybe don't have to spend much money for two implants? HK never gives good benefits for deaf people.

5) I am also not expecting if I have two implants, my hearing will be improved up? Just can understand from distances, helpful in noisy environment. For me, so what? I cannot understand everyone talking in restaurant, should read lip-reads often with a implant, perhaps I will feel more noisy in both ears.

6) Perhaps ENT is true, because he understand the deaf, what the result should be helpful or not. I have been as same A's result, my audiologist unconvinced the second CI will not be helpful for me. It will be no different from old implant, means understand nothing without lip-reads.

7) I have just known that the new implant(not processor only) will be coming in the future, perhaps can be more helpful for teenagers and adults. OR other benefit is: You can go swimming with them if no need to wear processors, enjoyable in water world ;), OR more facial stim, better mapping for implants?

8) I have one resident hearing in my old ear, actually I hear nothing with aid, but I should save it for future and must to treasure one implant now. You know the science technology always changes quickly. Everything goes new.

Above of wording is about my feeling. I am worry in the future happened if I had two implants. Hope can remind you to think about in the future if she growing up.

I have just known A has 3 electrodes active now...I wonder that she can hear a lot with 3 electrodes!! Sooo Amazing :) Why don't allow her to try add more electrodes active step by step? I believe someday she will turn on all electrodes active, she can hear more with one implant if no facial stim occurred anymore!

If she finally hear with all electrodes active in one implant, she would control 2nd CI mapping easy. Because two implants will be more noisy in brain, have facial stim easily , maybe will be more hurt.

I hope you will consider again, to patient with one implant. A have just been one year now, right ? She has a long way to go, more time to learn. Because old implant result is very important than second one. If the old implant is very successful, hear and speak so well with it, will NOT have MORE problems on second implant result. You will be wondered how much her changing/differnet with both ears.

If feel no different from them, you will be more disappointed or unhappy, more stressful..etc.

This is my opinion. I also support her to have 2nd implant. Sound is wonderful for our world ;)

Looking forward for your good news.

Betty

PS my english is sooo poor, hope you don't mind.

PinkLAM said...

I say if that's what Amanda wants, then go for it! Everyone measures success differently, and just because Amanda's not a "typical" picture of success doesn't mean it won't help her tremendously! I love being bilateral.

I also have a friend who is around her age. She got her first implant about a year ago, and had very little hearing until then and uses a mix of sign and speech. She can't understand speech with her CI, but it has helped her so much with lipreading and her speech. She loves it, and is getting ready to go bilateral very soon.

I think Amanda should tell her surgeon why she wants a second CI and let him know that she does have appropriate expectations. I just don't see why she shouldn't be allowed to get another one!

katelocke said...

Hi there!

So exciting that Amanda wants a second implant - good on her!

I doubt very much that the ENT surgeon knows what he is talking about!

"In our meeting with her ENT today, he was unconvinced that a second CI would benefit her speech production, which he said was the reason second implantations are performed."

Second implants are implanted usually to help you hear better, not just to help speech!

The reason second implants are performed is actually more likely to give the implantee better sound direction perception, and 'surround sound'!!

Unbelievable. It sounds like he is just making stuff up, and I would be getting a second opinion.

katelocke said...

I think if that's what Amanda wants, she should get it. I find it very hard to believe that an ENT surgeon would use such a ridiculous excuse as speech production to prevent a second implant.

Second implants are usually suggested to give better directional perception, and 'surround sound'!! Not speech production, but speech perception.

If you need info about this, you should try some of the cochlear support neworks:

http://www.cochlear.com.au/Community/default.asp

Good luck!

jessiecijourney said...

That's great for Amanda get second CI. I am not surprise that she can't get second CI because not learn speech skill yet. It take the time to practice with her speech and lipreading. Until she feel ready for second CI. I believe she will get one.

I need to go speech therapy soon as possible. I hopefully I can get second CI after my baby's birth.

Good luck for Amanda!