meganph Posted May 5, 2013 Report Share Posted May 5, 2013 My daughter wears a hearing aid for a mild loss in her right ear but has a profound loss in her left ear. Her ENT and Audiologist are recommending she gat a CI in her left ear. I am torn because she seems to understand and respond appropriately when I talk to her. She does have a hard time in loud settings. Has anyone else had this and gotten a CI for their child? I am really worried about implanting her if she doesn't really need it since it will likely wipe out and residue hearing she has in that ear. Advice? Quote Link to comment Share on other sites More sharing options...
jpl2ci Posted May 5, 2013 Report Share Posted May 5, 2013 Hi Megan, How old is your daughter? Is she currently mainstreamed in the Denton ISD? Has your ENT or Audiologist suggested getting her tested at UNT or at Callier Center at UTD or UTSW in Dallas? Every situation is different so you have to follow your heart and really decide if this is what you want for your child. There are studies which prove that mainstreaming a child can be very beneficial and amazing progress can be made. Do you have any names of CI users that you can contact in the area to get further information. The Denton ISD may also be able to help you. This process is a big step and talking to parents of CI users and to CI users is extremely beneficial. If you want, I can send you the name and email address of several people, both in the DFW area and in other locales, with whom you could chat about the hows and whys of CI with their children. thanks John Quote Link to comment Share on other sites More sharing options...
simekj Posted May 5, 2013 Report Share Posted May 5, 2013 Hi Megan. I agree with John. You need to do what you think is best for your child. CI is great but if she is coping well with HA then she may not need to go that way just yet. Some audiologists are technology hobby-horse enthusiasts. Is she using an FM system with her HA to help her at school? If not, then I suggest that you follow that up first. If she is, then how is she coping with that? Doing a testing system that John mentioned is a really helpful way to gauge how much she actually hears with her HA. Bear in mind, that while she may appear to be coping, she may still be missing valuable information which will have an impact upon her potential. Her HA should be able to cope with noise if they are set right. Does she have an audio zoom function? If not the audiologist may be able to program a setting to act in that way. If after trying these avenues you find that she is still struggling then definitely consider a CI. I am now hearing better than I have ever heard with HA. (I was born profoundly deaf in both ears and used HA. I was also mainstreamed). I think I still heard better with FM than I am with CI at the mo but it is still early days and I can still use an FM and it is also still very good. Cheers Karen Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Adam Posted May 6, 2013 HearPeers Heroes Report Share Posted May 6, 2013 Megan, I think Karen and John both hit some really good points. As far as the HA is concerned, is hse is not using an FM system, I would for sure look into that as an option. That alone could have a huge impact. As Karen stated, she might seem to be coping but missing some key information. you would be amazed at how well you learn to guess in certain situations. bottom line though is you have to be 100% at peace and comfortable with going forward with the surgery. If you have any check in your spirit, definitley wait and get some more information. Some Doctors are a little quick to go for the CI while others want to wait as long as possible. There is nothing wrong with getting a second opinion to put your mind at ease. Luckily though, going with Medel would be an excellent choice if you are concerned about preserving as much residual hearing as you can. Thier electrode arrays are such that with the placement, the surgeon can preserve some of the hearing. hope this helps. Quote Link to comment Share on other sites More sharing options...
meganph Posted May 6, 2013 Author Report Share Posted May 6, 2013 Thank you for the replies! My daughter is 4.5 years old and is currently doing home bound services due to a heart defect that is soon to be repaired. Because of this she hasn't used an FM system since it is just her and a teacher. When you say "testing" do you mean regular booth testing or a special CI test? We have been doing booth testing since about 6 months old but of course it was more training then testing back then I can defiantly tell she is "faking it" in certain situations and she is VERY adaptable which makes it difficult to tell if she can hear or not at times. She has progressive hearing loss. Her hearing had been very mild in the right hear and mild/moderate in the left ear until just after Christmas when I noticed her yelling a lot so we went back in for more testing and found a mild/moderate loss in the right ear and profound loss in the left ear. After an MRI and CT both her ENT and Audiologist have been going full steam ahead for a CI. I think their big reason is that since she can still hear normal when aided in the right ear, and that the right ear has more red flags for future hearing loss that it would be best to put the CI in while her right ear could help "train" the left ear in what it is hearing. Which makes sense to me but of course I don't want to do an unneeded surgery. They have both also said that the sooner they do it the better because her auditory nerve in the left ear has been stimulated to a normal hearing range since she was 12 weeks old so the sooner they do it the better the nerve will respond. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Adam Posted May 6, 2013 HearPeers Heroes Report Share Posted May 6, 2013 Megan If you have any reservations at all, I would highly recommend you get a second opinion. These are very common these days and it will not offend your surgeon or audi a bit. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Adam Posted May 6, 2013 HearPeers Heroes Report Share Posted May 6, 2013 Megan If you have any reservations at all, I would highly recommend you get a second opinion. These are very common these days and it will not offend your surgeon or audi a bit. Quote Link to comment Share on other sites More sharing options...
jpl2ci Posted May 7, 2013 Report Share Posted May 7, 2013 Wow Megan, quite a bit of information that you are trying to process as a parent. Processing sound with a CI is different than processing sound with normal hearing, HA aided or not. A second opinion could help allay your concerns and maybe also give you additional information on how your daughter can best be served now and in the future. Bst wishes. John Quote Link to comment Share on other sites More sharing options...
kdehrkoop Posted May 20, 2013 Report Share Posted May 20, 2013 Dear Megan, You may be interested and can relate to my story so I am going to share with you my experience. To start out I am a 32-year-old, female who has unilateral hearing loss. I have a progressive hearing loss and was given hearing aids in high school by an audiologist. I hated them because sounds just didn't sound right. It sounded like I was hearing through a computer in one ear and the other one was normal so an audioloigist thought the best way to fix that would be to put two hearing aids in my ears which of course only made things worse. Subsequently, I threw both hearing aids away on my first day of college. During high school I was a straight "A" student. Once I got to college which was a rather large university my grades went to lower B's and C's. I transfered colleges to a private small college that had small class sizes (which cost a lot of money) but my grades improved again to A's. Once I graduated college I continued onto getting two master's degree's which I was able to do because of the small class sizes by this point in my education. Looking back I spend a lot of my career learning to lip read, read body language and quite frankly I spent a lot of time "in the quiet." I often misheard conversations, asked people to repeat things... Tasks that were difficult for me included localization of sound. For example, I would hear my phone ring but never could find it. People would call out my name but I would not know where they were or people would try talk to me and I would not know they were so I unintentionally blow them off. These things happened daily and were especially frustrating and honestly made me really tired. It was physically exhausting just trying to hear. Finally this last fall, I decided I needed to get a second opinion from a more reknowned medical facility. They decided I would be a candidate for a unilaterial cochlear implant. Figuring I had nothing else to lose I went throught with it. It has been a life altering experience. I am hearing 50% percent better than I did one month ago when I had the surgery. I still have things that I need to improve upon but I can actually hear things now. You have to decide what is best for you child. Please know as someone that has had two ear reconstructive surgeries prior to the cochlear implant. I would recommend two things: it never hurts to get a second opinion (I wish I would have a lot earlier in my life) and second you have to determine the long-term implications of both having and not having a cochlear implant are. Every situation is different. I just thought I would share my story since I can relate to some of the struggles. Quote Link to comment Share on other sites More sharing options...
kdehrkoop Posted May 20, 2013 Report Share Posted May 20, 2013 Megan, You should know I had a profound hearing loss in my right ear and a mild hearing loss in my left. I got implanted on my right side. Quote Link to comment Share on other sites More sharing options...
stevechat Posted September 7, 2013 Report Share Posted September 7, 2013 Hi Kristin - You mentioned in your post that when you used HAs the sound was artificial. How do you find the sound now with the CI? Are you aware of the difference in the quality of sound between your implanted ear and your "normal" ear? Or, has your mind totally adjusted to it so that you don't notice any difference between the two? steven Quote Link to comment Share on other sites More sharing options...
Kerri Posted December 3, 2014 Report Share Posted December 3, 2014 Meagan, I am fairly new to this forum and came across your post. Did you end up going fwd with a CI for your daughter? If so - did you use Med El? How is it going? Any information you can share would be great. Thanks you, Kerri Quote Link to comment Share on other sites More sharing options...
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