Guest guest Posted June 1, 2003 Report Share Posted June 1, 2003 Hi , I will be thinking about you and this coming Tuesday. May her surgery be successful and recovery speedy. We will be anxious to hear how it goes. Cheers, Ruth Surgery Date Hi all, some of you may remember me. I haven't posted anything in quite sometime but I have been reading all of your emails and learning a lot.(thanks) Just wanted to let everyone know that my daughter (11 yrs old) will be implanted on Tuesday, June 3rd with a N24. Please keep her in your thoughts. Thank you and I will update everyone after surgery Daughter - Surgery 6/3 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2004 Report Share Posted January 28, 2004 Sheila, If you make it to February 1st, with your job, you should be find because as far as I know, employers pay health insurance benefits for the month on the first. Since we are only talking days, you are probably safe as far as the surgery goes. All fingers and toes are crossed here for you. If they lay you off after that, remember you have COBRA you can pick up. I was on COBRA when my CI was done in 1999. Good luck.. Your surgery is very close. Congrats on the surgery date. What an exciting time. Where are you having sugery and who is your surgeon? Alice From: boomerdogg@... Hi Folks - I finally have my surgery date scheduled for Feb 23. I can't wait! Now the hard part is waiting. It also has been nerve-wracking since my employer laid off 14 people last week and I've just survived a 3rd round of layoffs in 2 years. <sigh> I just want to get through this surgery while I'm still employed and have health insurance. Sheila Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2004 Report Share Posted January 30, 2004 This is great news! Congratulations. Things are moving along nicely and you are right.. it's really not that far away. We are going to love following Jaxon's progress thru this and you are going to be amazed. Alice From: Curt & Kim Hello! We now have a surgery date for Mr. Jaxon. It is March 16. We go the 15th for pre-op and then they will let us know what time the surgery will be the next AM. It sounds so far away, but I know time will fly! I will certainly keep ya'll posted on how he does post implant. Kim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2004 Report Share Posted January 30, 2004 Alice, Thank you so much. It has been a battle to get this implant for Jaxon. We are anxious to see how he does with it. I certainly appreciate the support. Kim Re: Surgery date This is great news! Congratulations. Things are moving along nicely and you are right.. it's really not that far away. We are going to love following Jaxon's progress thru this and you are going to be amazed. Alice From: Curt & Kim Hello! We now have a surgery date for Mr. Jaxon. It is March 16. We go the 15th for pre-op and then they will let us know what time the surgery will be the next AM. It sounds so far away, but I know time will fly! I will certainly keep ya'll posted on how he does post implant. Kim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2004 Report Share Posted January 30, 2004 Kim, So glad a surgery date is in sight for Jaxon. Know you have gon through a lot to get this implant for him and I hope everything goes smoothly. Jaxon is in for a real treat. He'll be activated in time to hear the spring birds. Keep us updated and if you have any questions.. Ask away. He sounds like a very special little guy. <smiles> Hugs, Silly MI In , " Curt & Kim " <cwuellne@i...> wrote: > Hello! > > We now have a surgery date for Mr. Jaxon. It is March 16. We go the 15th > for pre-op and then they will let us know what time the surgery will be the > next AM. It sounds so far away, but I know time will fly! I will certainly > keep ya'll posted on how he does post implant. > > Kim > > --- > [Pre-scanned for viruses by Internet America.] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2004 Report Share Posted February 2, 2004 In a message dated 2/2/2004 9:03:02 PM Pacific Standard Time, djwool@... writes: The NRT technology would seem to be extremely beneficial in your situation. I do not know if the other companies have similar technology. (I only know about this from their brochures) DJ...Yes, the Clarions ( Advanced Bionics) have the same technology. It is called NRI. I have been tested with it and it is very interesting! Deb H Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2004 Report Share Posted February 2, 2004 Does he have a better/worse ear? Which one will they implant? On Mon, 2 Feb 2004 8:09pm, Curt & Kim wrote: > , > > Thanks for your warm message. It has truly been a rough road attempting > to > get Jaxon approved for the CI. He has auditory neuropathy/dyssynchrony > which can have a sensorineural hearing loss combined with a > dyssynchrony of > sound. Jaxon has quite a bit of residual hearing, but the signals he is > getting are dyssynchronized and not clear. Some days he hears well, > other > days he doesn't. Some days he appears to hear the same with his aids as > he > does without them. It is like having a loose connection. It is a very > frustrating diagnosis. He is not making any gains with his speech and > language development and at the age of 2 1/2, that is imperative! > However, > the CI actually has proven to be quite benficial to these little guys > so we > are anxious for this journey to begin. I will be thrilled to see him > when > he hears the birds sing for the first time. I also don't think he gets > music much at all. I know it may not be the same for him even with a CI > as > it is for me, but I know it will be better than what he is getting now. > I > will keep the list updated. He is of course a VERY special and > miraculous > child :-) > > Kim (Jaxon and Brixon's mom) > Re: Surgery date > > Kim, > So glad a surgery date is in sight for Jaxon. > Know you have gon through a lot to get this implant for him and I > hope everything goes smoothly. Jaxon is in for a real treat. He'll > be activated in time to hear the spring birds. > Keep us updated and if you have any questions.. Ask away. > He sounds like a very special little guy. <smiles> > Hugs, > Silly MI > > In , " Curt & Kim " <cwuellne@i...> wrote: >> Hello! >> >> We now have a surgery date for Mr. Jaxon. It is March 16. We go > the 15th >> for pre-op and then they will let us know what time the surgery > will be the >> next AM. It sounds so far away, but I know time will fly! I will > certainly >> keep ya'll posted on how he does post implant. >> >> Kim >> >> --- >> [Pre-scanned for viruses by Internet America.] > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2004 Report Share Posted February 2, 2004 , Thanks for your warm message. It has truly been a rough road attempting to get Jaxon approved for the CI. He has auditory neuropathy/dyssynchrony which can have a sensorineural hearing loss combined with a dyssynchrony of sound. Jaxon has quite a bit of residual hearing, but the signals he is getting are dyssynchronized and not clear. Some days he hears well, other days he doesn't. Some days he appears to hear the same with his aids as he does without them. It is like having a loose connection. It is a very frustrating diagnosis. He is not making any gains with his speech and language development and at the age of 2 1/2, that is imperative! However, the CI actually has proven to be quite benficial to these little guys so we are anxious for this journey to begin. I will be thrilled to see him when he hears the birds sing for the first time. I also don't think he gets music much at all. I know it may not be the same for him even with a CI as it is for me, but I know it will be better than what he is getting now. I will keep the list updated. He is of course a VERY special and miraculous child :-) Kim (Jaxon and Brixon's mom) Re: Surgery date Kim, So glad a surgery date is in sight for Jaxon. Know you have gon through a lot to get this implant for him and I hope everything goes smoothly. Jaxon is in for a real treat. He'll be activated in time to hear the spring birds. Keep us updated and if you have any questions.. Ask away. He sounds like a very special little guy. <smiles> Hugs, Silly MI In , " Curt & Kim " <cwuellne@i...> wrote: > Hello! > > We now have a surgery date for Mr. Jaxon. It is March 16. We go the 15th > for pre-op and then they will let us know what time the surgery will be the > next AM. It sounds so far away, but I know time will fly! I will certainly > keep ya'll posted on how he does post implant. > > Kim > > --- > [Pre-scanned for viruses by Internet America.] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2004 Report Share Posted February 2, 2004 Well, it's a bit tricky as oftentimes the audiograms don't even match up to how the child performs behaviorally. Some children with auditory neuropathy/dyssynchrony (AN/AD) will show a profound loss on an audiogram but behaviorally respond to speech/language at a much higher level at home. Others may show that they hear better than they show behaviorally. Jaxon has been pretty consistent with his audiograms when compared to how he performs behaviorally. I cannot tell that he has a " better: ear so we are basing the decision on his past 2 years of auidograms which all show that the left ear sometimes tests the same as, just a tad better, but more than once 10-15 dB worse than the right ear. The right ear never showed that it was significantly worse than the left. So, based on that, we have chosen the left ear. Kim Re: Surgery date > > Kim, > So glad a surgery date is in sight for Jaxon. > Know you have gon through a lot to get this implant for him and I > hope everything goes smoothly. Jaxon is in for a real treat. He'll > be activated in time to hear the spring birds. > Keep us updated and if you have any questions.. Ask away. > He sounds like a very special little guy. <smiles> > Hugs, > Silly MI > > In , " Curt & Kim " <cwuellne@i...> wrote: >> Hello! >> >> We now have a surgery date for Mr. Jaxon. It is March 16. We go > the 15th >> for pre-op and then they will let us know what time the surgery > will be the >> next AM. It sounds so far away, but I know time will fly! I will > certainly >> keep ya'll posted on how he does post implant. >> >> Kim >> >> --- >> [Pre-scanned for viruses by Internet America.] > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2004 Report Share Posted February 2, 2004 I hope all goes well, I will be very intrested to know how it turns out as AN is such a unique diagnosis and very dificult to interprete the data with young children. Are you going to get the Nucleus CI? The NRT technology would seem to be extremely beneficial in your situation. I do not know if the other companies have similar technology. (I only know about this from their brochures) DJ On Mon, 2 Feb 2004 9:18pm, Curt & Kim wrote: > Well, it's a bit tricky as oftentimes the audiograms don't even match > up to > how the child performs behaviorally. Some children with auditory > neuropathy/dyssynchrony (AN/AD) will show a profound loss on an > audiogram > but behaviorally respond to speech/language at a much higher level at > home. > Others may show that they hear better than they show behaviorally. > Jaxon > has been pretty consistent with his audiograms when compared to how he > performs behaviorally. I cannot tell that he has a " better: ear so we > are > basing the decision on his past 2 years of auidograms which all show > that > the left ear sometimes tests the same as, just a tad better, but more > than > once 10-15 dB worse than the right ear. The right ear never showed that > it > was significantly worse than the left. So, based on that, we have > chosen > the left ear. > > Kim > Re: Surgery date >> >> Kim, >> So glad a surgery date is in sight for Jaxon. >> Know you have gon through a lot to get this implant for him and I >> hope everything goes smoothly. Jaxon is in for a real treat. He'll >> be activated in time to hear the spring birds. >> Keep us updated and if you have any questions.. Ask away. >> He sounds like a very special little guy. <smiles> >> Hugs, >> Silly MI >> >> In , " Curt & Kim " <cwuellne@i...> wrote: >>> Hello! >>> >>> We now have a surgery date for Mr. Jaxon. It is March 16. We go >> the 15th >>> for pre-op and then they will let us know what time the surgery >> will be the >>> next AM. It sounds so far away, but I know time will fly! I will >> certainly >>> keep ya'll posted on how he does post implant. >>> >>> Kim >>> >>> --- >>> [Pre-scanned for viruses by Internet America.] >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2004 Report Share Posted February 3, 2004 DJ and Deb H., We have actually decided on the Clarion and that was the one feature that I completely forgot to look into on it, so thanks (Deb) for letting us know AB do indeed have an equivalent to the NRT. Definitely handy with small children, DJ. Good point. Kim (Jaxon and Brixon's mom) .. Re: Re: Surgery date In a message dated 2/2/2004 9:03:02 PM Pacific Standard Time, djwool@... writes: The NRT technology would seem to be extremely beneficial in your situation. I do not know if the other companies have similar technology. (I only know about this from their brochures) DJ...Yes, the Clarions ( Advanced Bionics) have the same technology. It is called NRI. I have been tested with it and it is very interesting! Deb H Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2004 Report Share Posted April 3, 2004 Wow, Dixie. This is great. I'm so glad you finally have the date with the doctor you preferred. I'm very excited for you today. <smile> We both have something to celebrate that day. Congratulations! Alice Surgery date Hello All, Happy Passover and Easter and hope everyone is enjoying this beautiful time of year. I have my surgery date, April 12th, in Nashville, TN. It has been such a long process to getting a CI for me because I had changed Doctors after I was approved for the implant. I started all over with a new Doctor and center and so glad I had this group and friends to depend on for information and guidance through the whole procedure, and those of you who gave me advice personally on seeking another Doctor and center when I wasn't happy with my original choice. I thank you for your support. I'm so looking forward to surgery now and having this part of it out of the way and heading on to activation. I guess like most future implantee's, I'm working to get a few things accomplished before the big day and... hopefully, will be able to scratch off more on my list as this week progresses. Again, a happy holiday week to all. Dixie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2004 Report Share Posted April 14, 2004 Just wanted to let everyone know that my wife's surgery had to be postponed...from April 16th....to unknown at this time future date...due to some pre-op testing problems... She is - understandably - quite disappointed and down right now. However, I have tried to cheer her up and as soon as she takes care of the medical basis for the postponement, she will be rescheduled.... Again, thanks to all for your advice and information. I will keep you posted on her progress as we take this journey.... on the road to hearing again... Sincerely, Ron Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2004 Report Share Posted June 27, 2004 Great news, Phyllis. You never told us whether you will be able to have the Clarion on the new side like the one you have now. I remember you told us that the surgeon doesn't do Clarion now. July 8th is very close. Yes.. it's going to be fun to read about your experiences going bilateral. Alice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2004 Report Share Posted June 27, 2004 yes I will get the clarion on this side also. He doesn't believe in mixing the brands and since I have done so well with this one he is doing the same on the other ear. I am really excited and I guess nervous too. Re: surgery date > > Great news, Phyllis. You never told us whether you will be able to have the Clarion on the new side like the one you have now. I remember you told us that the surgeon doesn't do Clarion now. > > July 8th is very close. Yes.. it's going to be fun to read about your experiences going bilateral. > > Alice > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2004 Report Share Posted June 27, 2004 I'm glad to read this as I agree with the doctor on this. It doesn't make sense to mix the implant types for many reasons. Your brain has adapted to the programming from your present implant. You would need to have mappings that are on two different computers because of the softwear. I think this is definitely a case where mixing would not work. I'm glad to read that he is going to do the 90K on the other side as I was a little worried about this for you. Alice yes I will get the clarion on this side also. He doesn't believe in mixing the brands and since I have done so well with this one he is doing the same on the other ear. I am really excited and I guess nervous too. Phyllis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2004 Report Share Posted June 28, 2004 Wow, Phyllis, your surgery day is coming soon! Best wishes for a successful surgery and a smooth recovery! I will be looking forward to reading what it's like for you to hear out of both sides of your head. Best wishes to you! Patti Surgery Day 11/25/02 (What A Day!) Hook Up Day 1/2/03 (A Happy Day!) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2004 Report Share Posted June 28, 2004 Yippee Phyllis!! and next year you will hear firecrackers in stereo. I am so happy for you. Snoopy Bilateral CIs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2004 Report Share Posted June 28, 2004 I am looking forward to it. I just dont know what it will be like either. However, I am giving it my best shot and hope it works for me. The doctor said that side looks great for an implant so I am looking forward to hearing things in stereo. Re: surgery date > Wow, Phyllis, your surgery day is coming soon! Best wishes for a successful > surgery and a smooth recovery! I will be looking forward to reading what > it's like for you to hear out of both sides of your head. > Best wishes to you! > Patti > Surgery Day 11/25/02 (What A Day!) > Hook Up Day 1/2/03 (A Happy Day!) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2004 Report Share Posted September 16, 2004 In a message dated 9/16/2004 2:39:07 PM Pacific Daylight Time, plsav42@... writes: I will travel to Seattle on the14th and spend the next 5 days getting counselled and then implanted.. then home to Anchorage for a month. perfect,, we can be busy " painting Seattle red " jk It will be so exciting for you! Let us know what the plans are and maybe one of us (there are several of us in Seattle area) can do something to help you out! Lee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2004 Report Share Posted September 16, 2004 Thanks! I will be first looking for a place to stay. Is there still a boarding house called Virginia Mason Apartments (or something like that?). I stayed there when I went to Seattle for Acoustic Neuroma surgery in 1994. Pam In a message dated 9/16/2004 1:49:28 PM Alaskan Daylight Time, spottedlee@... writes: > In a message dated 9/16/2004 2:39:07 PM Pacific Daylight Time, > plsav42@... writes: > > I will travel to Seattle on the14th and spend the next 5 days getting > counselled and then implanted.. then home to Anchorage for a month. > > > > perfect,, we can be busy " painting Seattle red " jk > > It will be so exciting for you! Let us know what the plans are and maybe > one of us (there are several of us in Seattle area) can do something to > help > you out! > > Lee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2004 Report Share Posted September 16, 2004 In a message dated 9/16/2004 3:11:27 PM Pacific Daylight Time, plsav42@... writes: Is there still a boarding house called Virginia Mason Apartments look like it is still " in business " but i don't know much about it. You can find more info at _http://www.vmmc.org/dbAccommodations/_ (http://www.vmmc.org/dbAccommodations/) Hope this helps. Lee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2004 Report Share Posted September 16, 2004 YIKE>.. the URL came double to me... it attacked AOL as well.. who else have that problem? let me try removing the hyperlink and see if that solve the doubles.... for hotel/apt... http://www.vmmc.org/dbAccommodations Lee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2004 Report Share Posted September 16, 2004 In a message dated 9/16/2004 2:27:20 PM Alaskan Daylight Time, spottedlee@... writes: > > YIKE>.. the URL came double to me... it attacked AOL as well.. who else > have > that problem? let me try removing the hyperlink and see if that solve the > doubles.... > > for hotel/apt... http://www.vmmc.org/dbAccommodations > > Lee Thank you Lee! Since I will be there for 5 days or so.. I'm looking for reasonable rates etc.. and it was very comfortable before when I was there. Also since I don't know how many family members will be flocking in .. I need to be prepared. I have told them that I need the time alone to meditate and focus and prepare myself mentally.. so hopefully no one will show up until after I wake up from surgery. I selfishly told everyone not to expect me to be good company.. but that a month later when I get turned on--then we can celebrate! lol! :-) Pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2004 Report Share Posted September 16, 2004 This is wonderful news. I can't think of a better way to end 10 years of silence as it sounds as if you just might be hearing by December 4th and definitely hearing the sounds of the holiday season. Boy do we know about those mixed feelings but it will all be worth it. Congratulations! What a journey! Alice > I have a surgery date of November 17th!  My ten year anniversary of being > totally deaf is coming up December 4th, so it seems perfectly reasonable to have > the surgery scheduled at this time. > > I will travel to Seattle on the14th and spend the next 5 days getting > counselled and then implanted.. then home to Anchorage for a month. > > I'm excited but scared and nervous too! A smorgasborg of feelings! > :-) > Pam > > > Quote Link to comment Share on other sites More sharing options...
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