Guest guest Posted September 7, 2010 Report Share Posted September 7, 2010 Hi Mimi. We did CI's on both sides. They weren't convinced she had a functional nerve on her right side, so we were prepared to only do one, but were so happy to find from her MRI that both nerves were functional. Our reasoning for doing both was that virtually everyone we'd heard from who initially only did one side, went back for the second side within a few years. We'd much rather have her go through the surgery and recovery and mapping process only once. Plus, we kind of took it as a sign when the MRI came back that both sides were good to go. My biggest suggestion for recovery is to ask them to switch from heavy pain meds to just Tylenol as soon as they'll let you. Lily wouldn't eat or drink anything until we took her off the heavy stuff and it got out of her system. We couldn't take her off the IV until she ate/drank so we spent most of the day after surgery just waiting for her to drink some milk before we could go home. Once we got home, she was her usual silly self and didn't seem to ever be in pain even though we just gave her Tylenol. The hardest part was getting her sleep routine back. It took a good week for her to get back to normal naps and nighttime sleep. She only wanted to sleep on one of us (but we figured she earned that!) And for your sake, take as many friends and family as you can and as many things as you can to stay busy and help pass the hours. Doing both sides was close to 8 hours prep and surgery time! Best of luck, please let me know how it goes and what you decide about one vs. two. ~Bari > > Hi Bari, > > I am Mimi, the mother of Phoenix, who had her first birthday last Saturday. > Phoenix was also born with bilateral profound hearing loss. We have decided to > have the CI surgery for her. > We are now waiting for the MRI and CT test on October 19th. > > Did Lily have CI on both sides? What do you think about the choice to have one > side CI or two sides? What suggests do you have for me such that we can prepare > for the surgery to make > > Phoenix comfort during the surgery and post surgery? Thanks a lot! > > Best wishes for Lily and your family, > > Mimi > > > > > ________________________________ > From: barihyatt <blackwellbari@...> > > Sent: Tue, September 7, 2010 2:07:15 AM > Subject: New Member > > > Hi, everyone. My name is Bari and my husband and I are proud parents of our 13 > month old Lily. Lily was born with bilateral profound hearing loss. She got > aides at 2 months and just had bilateral CI surgery on August 19. She did > remarkably well recovering - the hardest part was getting her back in her nice > sleep routine. She gets turned on in a week on Sept. 14 and we can't wait. I > hope she's excited to find out that all of her toys make sound, Mommy and Daddy > make sound, books have words and her sign language videos have fun songs she can > dance to Anyone else implanted around 1 year old? > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2010 Report Share Posted September 8, 2010 Thank you Bari! All the information is very helpful for us. I will let you know our decision. Good luck to Lily! Mimi ________________________________ From: barihyatt <blackwellbari@...> Sent: Tue, September 7, 2010 12:55:36 PM Subject: Re: New Member Hi Mimi. We did CI's on both sides. They weren't convinced she had a functional nerve on her right side, so we were prepared to only do one, but were so happy to find from her MRI that both nerves were functional. Our reasoning for doing both was that virtually everyone we'd heard from who initially only did one side, went back for the second side within a few years. We'd much rather have her go through the surgery and recovery and mapping process only once. Plus, we kind of took it as a sign when the MRI came back that both sides were good to go. My biggest suggestion for recovery is to ask them to switch from heavy pain meds to just Tylenol as soon as they'll let you. Lily wouldn't eat or drink anything until we took her off the heavy stuff and it got out of her system. We couldn't take her off the IV until she ate/drank so we spent most of the day after surgery just waiting for her to drink some milk before we could go home. Once we got home, she was her usual silly self and didn't seem to ever be in pain even though we just gave her Tylenol. The hardest part was getting her sleep routine back. It took a good week for her to get back to normal naps and nighttime sleep. She only wanted to sleep on one of us (but we figured she earned that!) And for your sake, take as many friends and family as you can and as many things as you can to stay busy and help pass the hours. Doing both sides was close to 8 hours prep and surgery time! Best of luck, please let me know how it goes and what you decide about one vs. two. ~Bari > > Hi Bari, > > I am Mimi, the mother of Phoenix, who had her first birthday last Saturday. > Phoenix was also born with bilateral profound hearing loss. We have decided to > have the CI surgery for her. > We are now waiting for the MRI and CT test on October 19th. > > Did Lily have CI on both sides? What do you think about the choice to have one > side CI or two sides? What suggests do you have for me such that we can prepare > > for the surgery to make > > Phoenix comfort during the surgery and post surgery? Thanks a lot! > > Best wishes for Lily and your family, > > Mimi > > > > > ________________________________ > From: barihyatt <blackwellbari@...> > > Sent: Tue, September 7, 2010 2:07:15 AM > Subject: New Member > > > Hi, everyone. My name is Bari and my husband and I are proud parents of our 13 > > month old Lily. Lily was born with bilateral profound hearing loss. She got > aides at 2 months and just had bilateral CI surgery on August 19. She did > remarkably well recovering - the hardest part was getting her back in her nice > sleep routine. She gets turned on in a week on Sept. 14 and we can't wait. I > hope she's excited to find out that all of her toys make sound, Mommy and Daddy > > make sound, books have words and her sign language videos have fun songs she >can > > dance to Anyone else implanted around 1 year old? > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2011 Report Share Posted April 2, 2011 Hi Harry, and welcome to the group, One of the most important parts of learning to hear with an implant is learning what you have to pay attention to and what you can ignore. Sounds like lawn mowers, traffic a few blocks away, clocks ticking, toilet flushing and so forth you will hear, but like hearing people you can ignore them. Voices require you to pay attention. Since many of us who are deaf tend to listen to everything, we really have to retrain ourselves to attend to what is important and ignore what is not. Good luck. Often the processor itself will take care of tinnitus or other noises in the ears. Musical ear would be good if it was tunes you wanted to listen to. Have your own personal play list and all. But annoying and frustrating if you have to listen to the same old song over and over again. Best wishes, Hi; my name is Harry. I had the internal device implanted in one ear on Mar. 25 and now have to wait patiently until April 29 for the external processor. I am a 60-yr old college instructor who has been hard of hearing all my life due to Mondini dysplasia and has worn binaural hearing aids for 40+ years. For the last year I have been experiencing bouts of flunctuating hearing loss in one ear and total hearing loss in the other. Fortunately I learned sign language 30 years ago doing volunteer work at the State School for the Deaf and my employers provide interpreters to assist me in teaching math and physics. For the few weeks prior to the surgery and even now with total hearing loss, I suffer from Musical Ear Syndrome where I am bothered by my brain registering sounds that aren't really there such as big band or orchestra music and white noise like vacuum cleaner or chirping birds. I see the surgeon next week to have the sutures removed and I can hardly wait to begin hearing again. I have been warned that the sound quality may not be what I am used to but I feel that I can adapt to most anything. After the first processor is up and running, I want to have the other ear also done. I am hoping that insurance picks up most of the cost for the 2nd. Thank you for this opportunity to interact with this Cochlear Implant group and to share my story as it unfolds. ____________________________________________________________ Groupon & #8482 Official Site 1 ridiculously huge coupon a day. Get 50-90% off your city & #39;s best! http://thirdpartyoffers.juno.com/TGL3141/4d9798585a9684c098ast04duc Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2011 Report Share Posted June 6, 2011 Hi everyone, I'm a new member who joined last week. On 5/11 I had total knee replacement on my right leg. I am frustrated at the progress made in range of motion. My surgeon warned me it would be tough as I had previous trauma to patella, tibia and fibula due to an auto accident in 1/08 that resulted in ORIF surgery. I never did regain full ROM on ankle and knee. This surgery is a direct result from auto accident. Other than removing screws and wire from patella all other hardware remains. Has anyone else had a total knee replacement on knee that had previous trauma to? Did it take you longer to regain ROM? How much did you regain? Thanks for your help! Donna Sent from my iPhone Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2011 Report Share Posted July 20, 2011 Shawana, don't know if the state location has any bearing on it. While I got implanted 2007/2008 and have had great results, I would be in somewhat the same situation should my processors need to be replaced. I am trying to keep my processors " tuned up " for a couple more years! Please keep us updated on what you find out. BTW, I learned something new today. SAHM? Stay At Home Mom. Neely in Dallas Texas > > Hi! I've just joined your group, and thought I'd introduce myself. My name is a and I'm a 31 yr old married, SAHM to two. My son is 11 and my daughter is 2. I was implanted with the Freedom in October of 2005. I have done wonderfully with it. I went from 0% speech recognition to 90% in 6 mos. At the time that I got the implant, I was on medicaid. I've since gotten married and do not qualify for medicaid, as my husband makes too much (whoever heard of THAT being a bad thing!) > > Anyway, here's my dilemma. My processor is in dire need of being replaced. I'd really love to upgrade to the new one, but the costs are just out of the question right now and from what we understand by speaking with both Cochlear and our insurance (BCBS), it most likely will not be covered. What, if anything, can I do? Anyone else ever been through this? Any and all help is appreciated!!! Thank you all in advance and have a blessed day! > > a Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2011 Report Share Posted July 20, 2011 I started with the extended warranty when the original warranty on my Freedom (got it in 2006) ran out. It was worth it to me as I was having to replace the processor once or twice a year due to moisture issues. Rae  ________________________________ From: rsneely <rsneely@...> Sent: Wed, July 20, 2011 10:52:35 AM Subject: Re: New member  Shawana, don't know if the state location has any bearing on it. While I got implanted 2007/2008 and have had great results, I would be in somewhat the same situation should my processors need to be replaced. I am trying to keep my processors " tuned up " for a couple more years! Please keep us updated on what you find out. BTW, I learned something new today. SAHM? Stay At Home Mom. Neely in Dallas Texas > > Hi! I've just joined your group, and thought I'd introduce myself. My name is >a and I'm a 31 yr old married, SAHM to two. My son is 11 and my daughter is >2. I was implanted with the Freedom in October of 2005. I have done wonderfully >with it. I went from 0% speech recognition to 90% in 6 mos. At the time that I >got the implant, I was on medicaid. I've since gotten married and do not qualify >for medicaid, as my husband makes too much (whoever heard of THAT being a bad >thing!) > > > Anyway, here's my dilemma. My processor is in dire need of being replaced. I'd >really love to upgrade to the new one, but the costs are just out of the >question right now and from what we understand by speaking with both Cochlear >and our insurance (BCBS), it most likely will not be covered. What, if anything, >can I do? Anyone else ever been through this? Any and all help is appreciated!!! >Thank you all in advance and have a blessed day! > > a Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2011 Report Share Posted July 21, 2011 a? Can you explain " My processor is in dire need of being replaced.? " I had my 3G since 2003 and it wasn't in need of a upgrade before I lost mine a few months ago. You did not mention repairs or anything. Many insurance will replace after 5 years and I think you can argue that. I noticed you said " most likely will not be covered. " Have you talk to them and ask? Are you able to file an appeal? I did that when Medicaid in my state denied me an CI but I got it few months later by appeals. I would have gotten an upgrade if I want to but I can't afford the $1,500 after insurance as it only will pay 80%. They told me that 5 years had passed and I am eligible for upgrade even if the 3G is still working great. I do not have Medicaid anymore. Even if I do, they are NOT covering any hearing services (hearing test, hearing aid or cochlear implants or programming -- ANOTHER WORD, NOTHING) to adults at this time, thanks to program cut. Lee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2011 Report Share Posted July 22, 2011 Nothing is showing on the display window on it anymore, the rubber on the volume/telephone button is completely worn away (this seems to be a common problem with my processors, anyone else have this problem?), and then where the two pieces join together is not tight like it should be anymore. I say, " most likely will not be covered " as that is the impression we got after speaking with insurance and Cochlear. Our insurance (BCBS) is telling us that we can order the new upgrade and then file a claim. My husband does not want to do this as there is no way to tell what, if anything, the insurance will pay and what we will be stuck with paying. > > a? Can you explain " My processor is in dire need of being > replaced.? " I had my 3G since 2003 and it wasn't in need of a upgrade before I lost > mine a few months ago. You did not mention repairs or anything. Many > insurance will replace after 5 years and I think you can argue that. I noticed > you said " most likely will not be covered. " Have you talk to them and > ask? > > Are you able to file an appeal? I did that when Medicaid in my state > denied me an CI but I got it few months later by appeals. > > I would have gotten an upgrade if I want to but I can't afford the $1,500 > after insurance as it only will pay 80%. They told me that 5 years had > passed and I am eligible for upgrade even if the 3G is still working great. I > do not have Medicaid anymore. Even if I do, they are NOT covering any > hearing services (hearing test, hearing aid or cochlear implants or > programming -- ANOTHER WORD, NOTHING) to adults at this time, thanks to program cut. > > Lee > > > Quote Link to comment Share on other sites More sharing options...
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