Re: Anyone use an interpreter for CSL?
    Posted by: "Kathleen Heller" nicoj@earthlink.net leigha10538
    Date: Wed Jan 27, 2010 7:19 am ((PST))

I can't really recommend a CSL book, because you can't get them in the 
US.  Any CSL book would be great.  Another Mom copied the book she had 
and sent it to me.  That is how I got one.  If you know someone there, 
perhaps they can send you one?

Must run now, we leave tonight!

Kathleen





Messages in this topic (6)
________________________________________________________________________
1b. Re: Anyone use an interpreter for CSL?
    Posted by: "cynthia a. modrosic" smokeyjoe74@yahoo.com smokeyjoe74
    Date: Wed Jan 27, 2010 10:42 am ((PST))

i don't know if it would work, but you could try amazon - i ordered a book i couldn't find in the US from amazon.uk.

good luck!
cindy
 Cynthia A. Modrosic
http://www.dogster.com/?81526
http://www.dogster.com/?81525


"It was Toto that made Dorothy laugh, and saved her from growing as gray as her other surroundings." L. Frank Baum




________________________________
From: Kathleen Heller <nicoj@earthlink.net>
To: DeafHOH-Adoption@yahoogroups.com
Sent: Wed, January 27, 2010 9:19:09 AM
Subject: [DeafHOH-Adoption] Re: Anyone use an interpreter for CSL?

 
I can't really recommend a CSL book, because you can't get them in the
US. Any CSL book would be great. Another Mom copied the book she had
and sent it to me. That is how I got one. If you know someone there,
perhaps they can send you one?

Must run now, we leave tonight!

Kathleen




     

[Non-text portions of this message have been removed]






Messages in this topic (6)
________________________________________________________________________
1c. Re: Anyone use an interpreter for CSL?
    Posted by: "Randi Miller" rjmiller09@yahoo.com rjmiller09
    Date: Wed Jan 27, 2010 10:43 am ((PST))

I didn't investigate further, but if you Google Chinese Sign Language Video, Chinese Sign Language Gallaudet, etc., there are many connections which come up.




________________________________
From: Kathleen Heller <nicoj@earthlink.net>
To: DeafHOH-Adoption@yahoogroups.com
Sent: Wed, January 27, 2010 8:19:09 AM
Subject: [DeafHOH-Adoption] Re: Anyone use an interpreter for CSL?

 
I can't really recommend a CSL book, because you can't get them in the
US. Any CSL book would be great. Another Mom copied the book she had
and sent it to me. That is how I got one. If you know someone there,
perhaps they can send you one?

Must run now, we leave tonight!

Kathleen




     

[Non-text portions of this message have been removed]






Messages in this topic (6)
________________________________________________________________________
________________________________________________________________________
2a. Re: Deaf 12 year old available for adoption
    Posted by: "ColleenH" cibisylvan@yahoo.com cibisylvan
    Date: Wed Jan 27, 2010 9:02 am ((PST))

Yes, I agree, the grant should go on the child.   We're trying to get our kids listed on Reeces Rainbow.  All the grant money there goes directly on the child and it's a registered charity.

Colleen

--- In DeafHOH-Adoption@yahoogroups.com, "Gail" <gail.daras@...> wrote:
>
> Jen may I suggest if you are going to send money for Yuri's adoption that you send it to the agency.  Too many times people pull out of adoptions for various reasons.  This way the money can go towards any of the numerous fees a family has to pay an agency.  But I would tell them that the money is for him and no matter what the salary is of the family that they the adopting family receive this benefit.  Do not send money to a family directly.  Some agencies put too many restrictions on grants.  The grant should always belong to the child.
>
> Gail Daras
> Owner of DeafHOH-Adoption Group
>







Messages in this topic (14)
________________________________________________________________________
________________________________________________________________________
3. Urgent!! Zhang Li needs a family!
    Posted by: "momtofabfour" jodi@theallions.com momtofabfour
    Date: Wed Jan 27, 2010 11:38 am ((PST))

PLEASE help Zhang Li find her family! I don't even want to think about what will happen to her after April 1st. She is beautiful!! She attends a school for the deaf, is doing excellent in school, loves dance and has even been in some competitions, loves to swim and travel, and her teachers give her praises for high moral character and strong comprehension abilities. Her family just has to find her! Zhang Li CAN have a bright future!
Please take a look at her and help spread the word!!

>
> Jodi Allion
> Xiao Xian Foster Care Coordinator
> Love Without Boundaries
> "Changing the Lives of Orphans in Chinaâ
>
> www.lovewithoutboundaries.com
> www.lwbstories.com
> www.lifeofgiving.blogspot.com
>
> 
>
> ----- Original Message -----
> From: Bringing Hope to Children
> To: undisclosed-recipients
> Sent: Wednesday, January 27, 2010 11:19 AM
> Subject: Zhang Li - URGENT
>
>
> Once again we have a girl that is about to age out and will turn 14 on April 1, 2010. She is Zhang Li, she is deaf and has hep-B. Her time is so short that ideally we need someone that already has an approved I-800A. She is on the shared list.  Please take a look at her on our site at http://bringinghopetochildren.org . Also let anyone know about her that might be interested in adoption.
>
> She only has a few weeks left until she will no longer have a chance to be adopted and have a family.
>
>
>
> Dick and Cheryl Graham
> iaap2000@...
> 423-658-1559
>







Messages in this topic (1)





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still not walking
    Posted by: "Thalia B" thaliaandhannah@yahoo.com thaliaandhannah
    Date: Wed Jan 27, 2010 4:44 am ((PST))

Hi everyone
Im new to this group and have been reading through the discussions, which are very helpful to me.
I have a 25 month old daughter, who was born with hearing, but with a rare liver disease, she recieved two liver transplants last year, and went through 6 major surgeries before she was even one and a half.  She spent 6 months in the pediatric ICU.  After a couple months of being discharged, I realised Hannah wasn't saying anything, and was ignoring me when I spoke to her, I thought it was attitude and her just not wanting to listen to me!  But further tests prove that she has severe to profound hearing loss in both ears, as a side-effect to some ofthe medicines she received during her treatment.  We are now waiting on word from a hospital to get her bilateral cochlear implants.  We are in the meantime trying to raise funds to have it done, we are from Trinidad (in the Caribbean) and have no health insurance.  We're hopeful and excited for her to finally get these implants! And be able to hear and talk to us! 

Hannah started walking late, she first walked on her own when she was 23 months old!  But I think that's mainly because she was bed-ridden for 6 months of her life.

Have a great day everyone
Thalia


     

[Non-text portions of this message have been removed]






Messages in this topic (18)
________________________________________________________________________
1b. Re: still not walking
    Posted by: "ROBERT ERLAND" erlandhouse@verizon.net aerl840
    Date: Wed Jan 27, 2010 7:47 am ((PST))

Our daughter, Elizabeth has taken a few steps since 16 mos.  Now she is at
almost 19 mos and taking up to 6-10 steps and falling to her knees to crawl
or will get up again to try! She is bi-motal and we had the ushers test way
before her surgery back when she was 6 mos and they did not detect it.  We
also had the CT scan looked at by a specialist in neurotology and vestibular
Since she has a mal-formed cochlea it is more common I guess for them to
have vestibular issues and walk late due to balance.  If she is not walking
by 20 mos I was going to look into some P.T. for her to help her.  She is
finally getting the hang of it.  After talking to many different specialists
on their opinion it was best to now have her walk now behind toys she can
push.  Before she couldn't push them without falling over and now she's
having fun with them.  Her muscles are getting stronger just from learning
how to walk.  Also, I do notice when we go anywhere NEW she won't try
walking much at all.  She does most of her walking at home for now.  I hope
this helps



Amy in Oregon



[Non-text portions of this message have been removed]






Messages in this topic (18)
________________________________________________________________________
1c. Re: still not walking
    Posted by: "Shirlee Serafin" saserafin@comcast.net saserafin1
    Date: Wed Jan 27, 2010 9:38 am ((PST))

Our daughter didn’t walk until she was 2 ½.  She didn’t have Ushers, but was
born with Cerebral Palsy (specifically Periventricular Leukomalasia).  We
didn’t know it at the time as she had great apgar scores when born.  She is
deaf as a result of the CP, but has no other disabilities, she was simply
delayed in her gross motor skills.  The CP occurred most likely because I
got a sick at about my 6th month of pregnancy.  Dr. gave me meds including
cough medicine.  Not sure if it was the meds or my illness that caused her
CP.  This particular CP usually causes deafness, blindness or both.  We are
very fortunate that she has perfect vision.

Best of luck to you.

Shirlee Serafin

Lyndsee 11 yrs old, CII Jun 02, the right map, Jan 03









[Non-text portions of this message have been removed]






Messages in this topic (18)
________________________________________________________________________
1d. Re: still not walking
    Posted by: "Elizabeth and Amy" erlandhouse@verizon.net aerl840
    Date: Wed Jan 27, 2010 1:39 pm ((PST))

Our daughter, Elizabeth has taken a few steps since 16 mos.  Now she is at almost 19 mos and taking up to 6-10 steps and falling to her knees to crawl or will get up again to try! She is bi-motal and we had the ushers test way before her surgery back when she was 6 mos and they did not detect it.  We also had the CT scan looked at by a specialist in neurotology and vestibular  Since she has a mal-formed cochlea it is more common I guess for them to have vestibular issues and walk late due to balance.  If she is not walking by 20 mos I was going to look into some P.T. for her to help her.  She is finally getting the hang of it.  After talking to many different specialists on their opinion it was best to now have her walk now behind toys she can push.  Before she couldn't push them without falling over and now she's having fun with them.  Her muscles are getting stronger just from learning how to walk.  Also, I do notice when we go anywhere NEW she won't try walking much at all.  She does most of her walking at home for now.  I hope this helps



Amy in Oregon


--- In XXXXXXXXXXXXXXXXXXXXXXXX, "omaura82" <omaura82@...> wrote:
>
>
> Hi - mine didn't walk until she was two. She's had the ERG and she does not have Ushers or Pendreds. Just enlarged vestibular aqueducts which were diagnosed with a CT scan.
>
> --- In XXXXXXXXXXXXXXXXXXXXXXXX, "Sarah L" <smskeie@> wrote:
> >
> > Did any of your kiddos walk late and not have Ushers?  Aliyah is 20 months old and still crawling most of the time.  She can walk, but not good enough yet.  She will take maylbe 10 to 12 steps.  We have been told its vestibular and also that because she started standing and cruising around furniture late that her leg muscles are weak.  The pediatrician told us that her walking is about where a typical 13 month old would be.  I was just wondering if anyone has experienced this with their children.  Thanks.
> >
> > Sarah L, Mom to Aliyah.
> >
>







Messages in this topic (18)
________________________________________________________________________
________________________________________________________________________
2a. ? about going bilateral
    Posted by: "frank.jayne" frank.jayne@yahoo.com frank.jayne
    Date: Wed Jan 27, 2010 5:18 am ((PST))

Is there anyone out here that has a severe to profound hearing loss child that has decided one implant is good enough?  If so, what swayed your decision either way?






Messages in this topic (10)
________________________________________________________________________
2b. Re: ? about going bilateral
    Posted by: "Amy De Domenico" amydedomenico@yahoo.com amydedomenico
    Date: Wed Jan 27, 2010 5:47 am ((PST))

My husband and I had initially thought of one implant. But we were convinced to go bilateral as all the studies indicate that bilateral users can hear significantly better in noisy environments and can localize sound much better. I have read of several kids who received one implant begging for a second one and then reading on how much better they could hear with two. There are many parents in this forum who have been fighting insurance companies for two implants so I'm sure they can share all the hard evidence supporting bilateral implants. I do know that feeling though, wondering if we could get away with just one- less equipment, etc. but now we are so relieved that we decided to go with two and have not regretted it one bit!

Amy
Mom to Ava, 18mos, bilateral Nucleus 5 (implanted at 9mos)
Sent from my iPhone 3GS
www.fortheloveofava.blogspot.com

On Jan 27, 2010, at 8:18 AM, "frank.jayne" <frank.jayne@yahoo.com> wrote:

Is there anyone out here that has a severe to profound hearing loss child that has decided one implant is good enough? If so, what swayed your decision either way?

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Messages in this topic (10)
________________________________________________________________________
2c. Re: ? about going bilateral
    Posted by: "tara thompson" emilypeanut1@yahoo.com tylersma2007
    Date: Wed Jan 27, 2010 7:55 am ((PST))

Tyler was doing just fine with one implant and it was really the cochlear implant team who swayed us. We hit the two year mark with the first one and at that point studies show that the newer ear may not be on level with the older one. We took that into consideration. We considered failure and the odds of them both failing at the same time were slim and having heard so many stories about failure and explant/reimplant, going without hearing, etc the idea of having a second backup ear was becomming appealing. Finally it was my own experience. I am profoundly deaf in one ear and severe in the other and even with my hearing aid I cannot localize sound. It's difficult all the time; work, home, social events, anything you can think of. Her being able to localize for a life time is a huge deal for me.
 
Also, she was doing fabulous with one ear. Her speech was coming along nicely; her receptive language was through the roof. However, once she started using her second ear she just exploded! Her articulation is better, she enjoys music and couldn't stand it before, her vocabulary has quadrupled. I can call her from her bedroom and say Tyler come here and she knows where I am. Two surgeries are difficult and scary but the benefits far outweigh it.

Tara Thompson
Mom to Tyler, 5, Bilateral Med-El Implants

--- On Wed, 1/27/10, frank.jayne <frank.jayne@yahoo.com> wrote:


From: frank.jayne <frank.jayne@yahoo.com>
Subject: [cicircle] ? about going bilateral
To: XXXXXXXXXXXXXXXXXXXXXXXX
Date: Wednesday, January 27, 2010, 7:18 AM


 



Is there anyone out here that has a severe to profound hearing loss child that has decided one implant is good enough? If so, what swayed your decision either way?









     

[Non-text portions of this message have been removed]






Messages in this topic (10)
________________________________________________________________________
2d. Insurance Denials
    Posted by: "Jennifer Kirsch" jenniferkirsch@yahoo.com jenniferkirsch
    Date: Wed Jan 27, 2010 7:58 am ((PST))

If your insurance denied you for any reason, can you tell me why and whom they where?
I am trying to take note, we have to switch insurance and want to make sure we go with a company who will implant under a year and will cover bilaterals.

Thanks!!


     

[Non-text portions of this message have been removed]






Messages in this topic (10)
________________________________________________________________________
2e. Re: ? about going bilateral
    Posted by: "lauren_rosenthal" lauren_rosenthal@yahoo.com lauren_rosenthal
    Date: Wed Jan 27, 2010 8:02 am ((PST))

The bilateral question is something we are thinking about now as well.  We have already submitted to the insurance company for the second implant, but at the same time we are weighing the pros and cons.  One thing that has me really concerned is in the new file posted to the CI Circle files, about hearing loss progressing for Connexin-caused deafness.  This is really swaying my decision toward getting the second implant for our son.  If there is hard evidence supporting the fact that hearing may progressively get worse, then I want to give him the best chance to use that ear with an implant, and implant as early as possible.  This issue may not be relevant for other causes of deafness, so it depends on your situation.  This article may just be enough to scare me into getting the second implant - in addition to all the other proven benefits of being bilateral.  I'm not saying you should base your decision on the possiblity of worsening hearing loss in the unimplanted ear, but it is one more valid consideration. 

I'm interested in what others have to say as well.  Such a tough decision!     

--- In XXXXXXXXXXXXXXXXXXXXXXXX, "frank.jayne" <frank.jayne@...> wrote:
>
> Is there anyone out here that has a severe to profound hearing loss child that has decided one implant is good enough?  If so, what swayed your decision either way?
>







Messages in this topic (10)
________________________________________________________________________
2f. Re: ? about going bilateral
    Posted by: "Barbara Mellert" Barbara.T.Mellert@Dartmouth.edu btmellert
    Date: Wed Jan 27, 2010 8:21 am ((PST))

Hi - my two sons both have bilateral CIs.  They aren't a "typical" CI
story in that they used hearing aids up until about four years ago.  My
older son had a significant drop in hearing so we explored and ended up
with a CI for him.  Tom received his first implant when he was 13.  He
did have a bit of a tough time with the aftereffects of the surgery. 
Who knew he'd have a black eye?  He had problems with nausea from the
anesthesia as well for a couple of days.  But he made amazing progress. 
We learned that our insurance company was paying for bilaterals and Tom
himself told me he wanted the second implant.  My younger son, Sam, also
now is bilateral (he received his implants when he was 12 and 13).  Both
boys would tell you that having the second CI has been well worth it. 
They are able to localize sounds which they've never been able to do. 
They can hear better in noise.  And I know results aren't typical for
everyone but neither boy has needed their FM system any longer in
school.  They do fine in assemblies, etc.  So?  I thought you'd like to
hear their personal experiences about it.

Barbara
Mom to Tom, 17 and Sam, 15
Both bilateral Nucleus Freedoms

lauren_rosenthal wrote:
> The bilateral question is something we are thinking about now as well.  We have already submitted to the insurance company for the second implant, but at the same time we are weighing the pros and cons.  One thing that has me really concerned is in the new file posted to the CI Circle files, about hearing loss progressing for Connexin-caused deafness.  This is really swaying my decision toward getting the second implant for our son.  If there is hard evidence supporting the fact that hearing may progressively get worse, then I want to give him the best chance to use that ear with an implant, and implant as early as possible.  This issue may not be relevant for other causes of deafness, so it depends on your situation.  This article may just be enough to scare me into getting the second implant - in addition to all the other proven benefits of being bilateral.  I'm not saying you should base your decision on the possiblity of worsening hearing loss in the unimplanted ear, but!
>   it is one more valid consideration. 
>
> I'm interested in what others have to say as well.  Such a tough decision!     
>
> --- In XXXXXXXXXXXXXXXXXXXXXXXX, "frank.jayne" <frank.jayne@...> wrote:
>   
>> Is there anyone out here that has a severe to profound hearing loss child that has decided one implant is good enough?  If so, what swayed your decision either way?
>>
>>     
>
>
>
>
> ------------------------------------
>
> Under no circumstances are the comments on this list to be used for research, publication, etc., without the express consent of the person who posted. This list is not to be used for commercial purposes.  Yahoo! Groups Links
>
>
>
>   

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Telephone:  603/646-2877
URL:  http://www.dartmouth.edu/~ssc

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Messages in this topic (10)
________________________________________________________________________
2g. Re: Insurance Denials
    Posted by: "Julia Wilson" wilson.feit@yahoo.com wilson.feit
    Date: Wed Jan 27, 2010 8:29 am ((PST))

We have the Empire Plan, which is the plan for most New York state employees.  It's administered by both BCBS and United.  They have separate claim approval offices.  We were originally denied by both for implantation under a year, and we managed to get an expedited appeal.  The deal was that if even one company reversed its decision, then that was sufficient -- an approval trumps a denial, and we would be covered.  I've now forgotten which was which (I'm at work and can't look it up), but one company stuck by their denial, and the other (after making us wait in agony for a week) reversed to an approval, so we were ultimately approved for the entire procedure.  We went with NYU Cochlear Implant Center, which is out of network, so technically the plan only paid 80%, but because of out-of-pocket maxes we only ended up paying a few thousand out of pocket.
 
So it worked out well for us in the end.  But I think that both companies have a history of initially denying (and only sometimes eventually approving) early implantation, and I don't know anything about their stance on bilaterals.
 
Julia

Parent of Ben (b. 10-19-07), AB CI in right ear (July 2008), aided left, www.orange-b.blogspot.com

--- On Wed, 1/27/10, Jennifer Kirsch <jenniferkirsch@yahoo.com> wrote:


From: Jennifer Kirsch <jenniferkirsch@yahoo.com>
Subject: [cicircle] Insurance Denials
To: XXXXXXXXXXXXXXXXXXXXXXXX
Date: Wednesday, January 27, 2010, 3:58 PM


 



If your insurance denied you for any reason, can you tell me why and whom they where?
I am trying to take note, we have to switch insurance and want to make sure we go with a company who will implant under a year and will cover bilaterals.

Thanks!!

[Non-text portions of this message have been removed]









     

[Non-text portions of this message have been removed]






Messages in this topic (10)
________________________________________________________________________
2h. Re: ? about going bilateral
    Posted by: "surgespancho" surgespancho@yahoo.com surgespancho
    Date: Wed Jan 27, 2010 8:43 am ((PST))

My daughter just received her 2nd implant last month (she received her 1st 10 mo. ago), and was activated a week ago. Before the 2nd activation she would take her time puting her CI on, I always had to tell her/remind her to put it on otherwise I don't think she would have. Now that she has her 2nd ear, she doesn't want to take either of them off! She told me she wanted to sleep with them on! I wasn't expecting this at all, I was expecting her to be more like she was when the first was activated (not wanting to wear it). She loves her CI's more than ever now. She is the one bringing her CI's to me to put them on her now. I'm assuming its just a more balanced sound now. We went in yesterday to get a more accurate/louder map, and she's still in love with her ears even though its louder.

I couldn't be happier that we chose to go bilateral!

Andrea

--- In XXXXXXXXXXXXXXXXXXXXXXXX, "frank.jayne" <frank.jayne@...> wrote:
>
> Is there anyone out here that has a severe to profound hearing loss child that has decided one implant is good enough?  If so, what swayed your decision either way?
>







Messages in this topic (10)
________________________________________________________________________
2i. Re: ? about going bilateral
    Posted by: "Jennifer Kirsch" jenniferkirsch@yahoo.com jenniferkirsch
    Date: Wed Jan 27, 2010 8:46 am ((PST))

Nope, I would always recommend two.
If you have the opportunity than your child is clearly not benefiting from a hearing aid, why not give your child a chance to hear clearly with two ears?




________________________________
From: surgespancho <surgespancho@yahoo.com>
To: XXXXXXXXXXXXXXXXXXXXXXXX
Sent: Wed, January 27, 2010 10:43:11 AM
Subject: [cicircle] Re: ? about going bilateral

 
My daughter just received her 2nd implant last month (she received her 1st 10 mo. ago), and was activated a week ago. Before the 2nd activation she would take her time puting her CI on, I always had to tell her/remind her to put it on otherwise I don't think she would have. Now that she has her 2nd ear, she doesn't want to take either of them off! She told me she wanted to sleep with them on! I wasn't expecting this at all, I was expecting her to be more like she was when the first was activated (not wanting to wear it). She loves her CI's more than ever now. She is the one bringing her CI's to me to put them on her now. I'm assuming its just a more balanced sound now. We went in yesterday to get a more accurate/louder map, and she's still in love with her ears even though its louder.

I couldn't be happier that we chose to go bilateral!

Andrea

--- In cicircle@yahoogroup s.com, "frank.jayne" <frank.jayne@ ...> wrote:
>
> Is there anyone out here that has a severe to profound hearing loss child that has decided one implant is good enough? If so, what swayed your decision either way?
>





     

[Non-text portions of this message have been removed]






Messages in this topic (10)
________________________________________________________________________
2j. Re: ? about going bilateral
    Posted by: "Julia Wilson" wilson.feit@yahoo.com wilson.feit
    Date: Wed Jan 27, 2010 10:30 am ((PST))

We're sticking with one implant.  Ben is severe/profound in his left (actually, he just brushes against moderately severe in the lowest frequencies), but he understands speech with just a hearing aid in that ear (even without his CI on) far better than his audiogram would suggest.  Last spring we were giving a lot of thought to going bilateral and agonizing over it, but our sense was that he had good speech recognition with just the hearing aid and this was confirmed with some tests in August.  Now, I doubt the left ear (aided) contributes much to speech recognition in a noisy environment, but in a quiet one it's definitely a contributor.  We like the fact that he's getting acoustic continuous frequency stimulation (at least in lower frequencies, which are more important for music anyway) in at least one ear; we think it helps with music appreciation.
 
Before the August tests, our audiologist was pushing us toward bilaterals, but based on those results she supports our decision to stay bimodal.  There are definitely lots of perks to being bimodal.
 
Is your child getting any sound in the unimplanted ear?  If so, is it contributing to speech recognition?  If not, then bilaterals are probably the way to go.
 
Julia

Parent of Ben (b. 10-19-07), AB CI in right ear (July 2008), aided left, www.orange-b.blogspot.com

--- On Wed, 1/27/10, frank.jayne <frank.jayne@yahoo.com> wrote:


From: frank.jayne <frank.jayne@yahoo.com>
Subject: [cicircle] ? about going bilateral
To: XXXXXXXXXXXXXXXXXXXXXXXX
Date: Wednesday, January 27, 2010, 1:18 PM


 



Is there anyone out here that has a severe to profound hearing loss child that has decided one implant is good enough? If so, what swayed your decision either way?









     

[Non-text portions of this message have been removed]






Messages in this topic (10)
________________________________________________________________________
________________________________________________________________________
3a. Thanks for the swimming advice!
    Posted by: "Rhonda Savage" mom2savages@msn.com momn2kds
    Date: Wed Jan 27, 2010 8:42 am ((PST))

That's awesome that you are able to use the set-up in that way.  We have so far not had any problems with the Alosak.  We used them quite a bit over the summer.  I'm not sure when I will replace them though.  We have three right now I believe and none have leaks or anything, but at some point I will want to start over with fresh ones just to be safe.

Rhonda Savage
Mom to Audrey, 12, hearing; and Neal, 10, CII at 2.9 years, bilateral at 7
"Hard does not mean impossible."
http://mamasavage.blogspot.com/<http://mamasavage.blogspot.com/>
http://savagereads.blogspot.com/<http://savagereads.blogspot.com/> (Neal's blog)

[Non-text portions of this message have been removed]






Messages in this topic (3)
________________________________________________________________________
3b. Re: Thanks for the swimming advice!
    Posted by: "nctimmerman" nctimmerman@yahoo.com nctimmerman
    Date: Wed Jan 27, 2010 12:15 pm ((PST))

The aloksak works great but you do need to be careful that you have completely sealed it.  Just like any ziplock bag, it can look sealed but not actually be completely closed.  I suggest you test it every time you use it and not risk the processor assuming it's shut. 

Cheryl

--- In XXXXXXXXXXXXXXXXXXXXXXXX, "lucasreedsmutti" <jrodman@...> wrote:
>
> Last summer, I carefully read all the posts that I could about waterproofing CIs for swimming. I just wanted to say thanks to everyone for their helpful advice. I decided to try the Aloksak bag / lycra swim cap set up, and it worked like a charm! Has anyone had any problems with the Aloksak bags that I should watch out for? Lucas has weekly aquatic therapy for his balance issues, and it is so much more meaningful now that he can hear instructions in the pool. This group is really my best CI resource. At my support group meeting tonight, I found myself saying "I read on cicircle that..." I look forward to reading my cicircle digests every night. Anyway, thanks!
>
> Jen
> mom to Lucas, 2, rt Freedom 12/26/08
> http://lifewithlucasrc.blogspot.com
>







Messages in this topic (3)
________________________________________________________________________
________________________________________________________________________
4a. Re: Anyone utilize Sign Language AND the implant?
    Posted by: "momtofabfour" jodi@theallions.com momtofabfour
    Date: Wed Jan 27, 2010 11:58 am ((PST))

Our daughter was 6 (zero formal language due to living in an orphanage) with implant #1 and 7 with implant #2. We tried for almost 3 years of using just the oral approach. After having a melt down one day with our AVT because of frustration on our part and our dd's part (due to lack of communication) we decided to add ASL to help. After only using it for about 6 weeks, Leah can know put 4 words together - sign and verbal.
I think there are two points:
1. Leah could understand what we said, she just couldn't express to us her needs\wants. She is very visual and just needed that extra cue.
2. Make sure that whomever is teaching her sign, that the auditory sandwich (I think that is what it's called) is used - say, sign, say.
We had an AVT session today, and Leah just blew both of us away with what she was saying and understanding! She is feeling more confident with herself now.
You just need to see what works best for your daughter and family and go for it!

Blessings,
Jodi A.
mom 2 the fab 4 including 2 from China






Messages in this topic (16)
________________________________________________________________________
________________________________________________________________________
5a. Litovsky on bilaterals, strategies
    Posted by: "Julia Wilson" wilson.feit@yahoo.com wilson.feit
    Date: Wed Jan 27, 2010 1:14 pm ((PST))

Hi, everyone.  Many of you are aware of Ruth Litovsky's research into binaural hearing and bilateral CIs.  She gave a talk yesterday at UW Madison that my father attended, and he sent me the following comments on it.  I've edited them a bit.  It's pretty long and very technical, but you might find it interesting if you're inclined in that direction.  Also, he wanted me to emphasize that this was just his interpretation of what she said, and he can't vouch for how accurate it is.  He's a mathematician with a strong background in engineering, so he probably understood it pretty well!

*******
Ruth Litovsky's website is http://www.waisman.wisc.edu/bhl/.

First of all, although in general she is (not surprisingly, this is the focus of her research) in favor of bilateral implants, for a case like Ben's where there is some residual hearing in the other ear she is emphatically on the side of retaining that and making good use of it, at least at the present and foreseeable stages of CI development.
And one thing that became clear to me, surprised me, was even more reinforcement for that: In general I would expect any "approximation"
to a waveform to do better at emulating the low frequency components than the high, but for reasons I am yet to understand fully the signal presented to the cochlea definitely includes information about
(i) extremely low frequencies, i.e. "rhythm", and (ii) high frequencies, but not in between. So when she played simulations (I know you have heard these, so had I but had not picked up on this implication) of what is believed to be perceived, representing CIs with 8 or 16 or 32 channels as well as the original signal, the crudest had essentially no "bass" information, the next had very little, and even the best had little compared to a full waveform. So the fact (as I recall it) that Ben's left ear has some hearing in the LF range is all the more important to retain. She agreed with that. She also very much supported the idea of combining CI and HA with ASL.

She is working with manufacturers, will be in Colorado with one of them this coming week. She is urging them to include more digital signal processing (DSP below) but even more (this became very clear as she went on) to develop ways to have bilateral implants working together. A lot of her experiments use as a measure how well the subject can locate the source of a sound: Some of the pictures at her website show a semicircle of speakers with the subject in the middle. A desired signal comes from one or several, and a noise signal (other voices, if the subject is old enough to have speech recognition) from others, and they measure number of correct ids as to where the desired signal is coming from, with different levels of noise. Of course many hearing problems, [my grandfather's] for example but also my ancient ears, show up as difficulty _understanding_ speech in a noisy environment, but the CI subject also has difficulty locating. (I don't notice that
myself, that is why I am distinguishing the two.) One of the factors in this location degradation she is pretty sure is the lack of correlation (remember she is working with bilateral CIs) between the signals. I probed into this a bit: I had not thought about how the processing in the CI's DSPs works, had thought of it as being like a hearing aid that is (at first thought) analog and so almost instantaneous, as well as linear, in moving signal between microphone and hearer. But she confirmed what was becoming obvious, and more and more relevant, that the computational DSP going on in the CI (and she reminded me that this is also true in fancy modern HAs) (a) takes time and (b) is decidedly non-linear, does not support superposition.

(It is amusing that this is also an issue in ham radio these days, where a modern receiver, and more and more transmitters, does a lot of DSP on the audio. Some of the most recent work on receivers, called Software Defined Radios, have just a little interface circuitry (analog->digital conversion) between an antenna and your PC.)

So the brain circuitry that does "stereo" signal location in the typical hearing person gets fed signals by the two CIs that don't correspond to what it was programmed to deal with. One questioner asked why they don't just make the two CI's identical: Litovsky pointed out that this is not completely possible, and I added that even if they were identical their nonlinearity would make the outputs not correlated since the inputs are not the same, for any source that needs locating. So there is a need for some mathematics here, what does it even mean to preserve correlation as we do these non-linear operations, and for experimental work to find out what aspects of the two signals need to be kept intact for the brain to process them best.

One of the things that became apparent is that the manufacturers in general are not pushing for exactly the things she thinks most important, for a collection of (understandable) reasons. One is just that some manufacturers, as you found in your pre-implant research, are putting most of their money into marketing rather than research and development. Another is that both the general public and manufacturers to some extent are amazed at how well things work now, compared to a pre-CI world, so the need for change is not as evident.

A question, natural, was why don't they just increase the number of channels. The problem is that the connection to any given nerve along the strip is not really very good, not nearly as good as the "natural" connection between sensors along the cochlea and the nerves, so they have to be overdriven to make sure the nerve gets excited. She described it as injecting current far more than nature would use. The result is that the current excites not just a nerve or a few nerves that you want, but a significant area of nerves. That limits how closely there is any point in putting the exciters, the crosstalk from one interferes with the next to some extent at this separation and would dominate if they were closer.

She had neat data showing (separately) how both word identification and source location degrade with signal-to-noise ratio for different subjects:
Normal hearing, unilateral implants, bilateral, and for different ages at implantation, different backgrounds (no hearing at birth to adults who had had normal hearing for decades), etc. These were some of the most striking, and disappointing, data: The bilateral implants she was working with (the comparison unilaterals had no hearing in other ear, not a match for Ben) would with time develop abilities almost equal to normal hearing for both word ID and location, if the signal was way above the noise. But as S/N degrades, the most advanced bilateral CI hearers dropped rapidly to almost no ability while normal hearing did not drop much until the signal was way _below_ the noise. Her proposed reasons for the dropoff are (a) degradation of neural circuits due to signal deprivation, for those who are implanted after a long delay, and (b) the independence, lack of correlation, between the two processors. For kids she also thinks an issue is where the
processor/microphone is located: Adults typically wear it on the ear. She gave as an example one girl with long hair, who (when she first met the girl) had the hair arranged in two peaks resembling Bugs Bunny's ears and the processors were mounted on those! The girl's clinical people had never suggested locating them closer to the ears, and when that was changed the girl had some improvement.

One thing she is trying right now is (not yet compact for use as an actual on-body processor, but simulated by connecting to a computer) connecting already implanted (bilateral) kids to external source that is correlated between ears. So she is doing the biological side of the research I mentioned above. I think at the moment the computer does not even take in real audio from a microphone, rather it is generating signals representing different kinds of correlated inputs and the subject takes some action based on that.

There were questions about why manufacturers don't put in more stuff, and she and I both were able to speak to the physical problem. I am astounded that they can do as much computing as they do in a few cubic millimeters, with minimal power usage and heat generation. But presumably those are "just" engineering problems: If someone can figure out what the DSPs should be doing, someone else may be able to figure out how to put those into usable processors.
******

Julia

Parent of Ben (b. 10-19-07), AB CI in right ear (July 2008), aided left, www.orange-b.blogspot.com


     





Messages in this topic (2)
________________________________________________________________________
5b. Re: Litovsky on bilaterals, strategies
    Posted by: "Jim Ellis" jde1@psu.edu jimmybaud2000
    Date: Wed Jan 27, 2010 2:51 pm ((PST))

Man, what an excellent report. We've participated in some of Litovsky's
studies, and if any of you have a chance, do  it...!

Julia, sounds like your old man has more than just a little on the ball.
I'd like to meet him sometime. Interesting comment about marketing.

There is a processor, I think it's a research processor at Cochlear, that's
trying to do the lateral timing stuff that's so difficult with two separate
bilateral processors. I don't know, physically, how you could do one
processor for two ears in a BTE configuration. That inter-aural timing stuff
is way, way over my head.

Best,

Jim

-----Original Message-----
From: XXXXXXXXXXXXXXXXXXXXXXXX [mailto:XXXXXXXXXXXXXXXXXXXXXXXX] On Behalf
Of Julia Wilson
Sent: Wednesday, January 27, 2010 4:15 PM
To: CiCircle
Subject: [cicircle] Litovsky on bilaterals, strategies

Hi, everyone.  Many of you are aware of Ruth Litovsky's research into
binaural hearing and bilateral CIs.  She gave a talk yesterday at UW Madison
that my father attended, and he sent me the following comments on it.  I've
edited them a bit.  It's pretty long and very technical, but you might find
it interesting if you're inclined in that direction.  Also, he wanted me to
emphasize that this was just his interpretation of what she said, and he
can't vouch for how accurate it is.  He's a mathematician with a strong
background in engineering, so he probably understood it pretty well!

*******
Ruth Litovsky's website is http://www.waisman.wisc.edu/bhl/.

First of all, although in general she is (not surprisingly, this is the
focus of her research) in favor of bilateral implants, for a case like Ben's
where there is some residual hearing in the other ear she is emphatically on
the side of retaining that and making good use of it, at least at the
present and foreseeable stages of CI development.
And one thing that became clear to me, surprised me, was even more
reinforcement for that: In general I would expect any "approximation"
to a waveform to do better at emulating the low frequency components than
the high, but for reasons I am yet to understand fully the signal presented
to the cochlea definitely includes information about
(i) extremely low frequencies, i.e. "rhythm", and (ii) high frequencies, but
not in between. So when she played simulations (I know you have heard these,
so had I but had not picked up on this implication) of what is believed to
be perceived, representing CIs with 8 or 16 or 32 channels as well as the
original signal, the crudest had essentially no "bass" information, the next
had very little, and even the best had little compared to a full waveform.
So the fact (as I recall it) that Ben's left ear has some hearing in the LF
range is all the more important to retain. She agreed with that. She also
very much supported the idea of combining CI and HA with ASL.

She is working with manufacturers, will be in Colorado with one of them this
coming week. She is urging them to include more digital signal processing
(DSP below) but even more (this became very clear as she went on) to develop
ways to have bilateral implants working together. A lot of her experiments
use as a measure how well the subject can locate the source of a sound: Some
of the pictures at her website show a semicircle of speakers with the
subject in the middle. A desired signal comes from one or several, and a
noise signal (other voices, if the subject is old enough to have speech
recognition) from others, and they measure number of correct ids as to where
the desired signal is coming from, with different levels of noise. Of course
many hearing problems, [my grandfather's] for example but also my ancient
ears, show up as difficulty _understanding_ speech in a noisy environment,
but the CI subject also has difficulty locating. (I don't notice that
myself, that is why I am distinguishing the two.) One of the factors in
this location degradation she is pretty sure is the lack of correlation
(remember she is working with bilateral CIs) between the signals. I probed
into this a bit: I had not thought about how the processing in the CI's DSPs
works, had thought of it as being like a hearing aid that is (at first
thought) analog and so almost instantaneous, as well as linear, in moving
signal between microphone and hearer. But she confirmed what was becoming
obvious, and more and more relevant, that the computational DSP going on in
the CI (and she reminded me that this is also true in fancy modern HAs) (a)
takes time and (b) is decidedly non-linear, does not support superposition.

(It is amusing that this is also an issue in ham radio these days, where a
modern receiver, and more and more transmitters, does a lot of DSP on the
audio. Some of the most recent work on receivers, called Software Defined
Radios, have just a little interface circuitry (analog->digital conversion)
between an antenna and your PC.)

So the brain circuitry that does "stereo" signal location in the typical
hearing person gets fed signals by the two CIs that don't correspond to what
it was programmed to deal with. One questioner asked why they don't just
make the two CI's identical: Litovsky pointed out that this is not
completely possible, and I added that even if they were identical their
nonlinearity would make the outputs not correlated since the inputs are not
the same, for any source that needs locating. So there is a need for some
mathematics here, what does it even mean to preserve correlation as we do
these non-linear operations, and for experimental work to find out what
aspects of the two signals need to be kept intact for the brain to process
them best.

One of the things that became apparent is that the manufacturers in general
are not pushing for exactly the things she thinks most important, for a
collection of (understandable) reasons. One is just that some manufacturers,
as you found in your pre-implant research, are putting most of their money
into marketing rather than research and development. Another is that both
the general public and manufacturers to some extent are amazed at how well
things work now, compared to a pre-CI world, so the need for change is not
as evident.

A question, natural, was why don't they just increase the number of
channels. The problem is that the connection to any given nerve along the
strip is not really very good, not nearly as good as the "natural"
connection between sensors along the cochlea and the nerves, so they have to
be overdriven to make sure the nerve gets excited. She described it as
injecting current far more than nature would use. The result is that the
current excites not just a nerve or a few nerves that you want, but a
significant area of nerves. That limits how closely there is any point in
putting the exciters, the crosstalk from one interferes with the next to
some extent at this separation and would dominate if they were closer.

She had neat data showing (separately) how both word identification and
source location degrade with signal-to-noise ratio for different subjects:
Normal hearing, unilateral implants, bilateral, and for different ages at
implantation, different backgrounds (no hearing at birth to adults who had
had normal hearing for decades), etc. These were some of the most striking,
and disappointing, data: The bilateral implants she was working with (the
comparison unilaterals had no hearing in other ear, not a match for Ben)
would with time develop abilities almost equal to normal hearing for both
word ID and location, if the signal was way above the noise. But as S/N
degrades, the most advanced bilateral CI hearers dropped rapidly to almost
no ability while normal hearing did not drop much until the signal was way
_below_ the noise. Her proposed reasons for the dropoff are (a) degradation
of neural circuits due to signal deprivation, for those who are implanted
after a long delay, and (b) the independence, lack of correlation, between
the two processors. For kids she also thinks an issue is where the
processor/microphone is located: Adults typically wear it on the ear. She
gave as an example one girl with long hair, who (when she first met the
girl) had the hair arranged in two peaks resembling Bugs Bunny's ears and
the processors were mounted on those! The girl's clinical people had never
suggested locating them closer to the ears, and when that was changed the
girl had some improvement.

One thing she is trying right now is (not yet compact for use as an actual
on-body processor, but simulated by connecting to a computer) connecting
already implanted (bilateral) kids to external source that is correlated
between ears. So she is doing the biological side of the research I
mentioned above. I think at the moment the computer does not even take in
real audio from a microphone, rather it is generating signals representing
different kinds of correlated inputs and the subject takes some action based
on that.

There were questions about why manufacturers don't put in more stuff, and
she and I both were able to speak to the physical problem. I am astounded
that they can do as much computing as they do in a few cubic millimeters,
with minimal power usage and heat generation. But presumably those are
"just" engineering problems: If someone can figure out what the DSPs should
be doing, someone else may be able to figure out how to put those into
usable processors.
******

Julia

Parent of Ben (b. 10-19-07), AB CI in right ear (July 2008), aided left,
www.orange-b.blogspot.com


     


------------------------------------

Under no circumstances are the comments on this list to be used for
research, publication, etc., without the express consent of the person who
posted. This list is not to be used for commercial purposes.  Yahoo! Groups
Links









Messages in this topic (2)
________________________________________________________________________
________________________________________________________________________
6a. Reimplant after AB vendor B failure
    Posted by: "katiesmom21501" rtatro@bellsouth.net katiesmom21501
    Date: Wed Jan 27, 2010 1:20 pm ((PST))

If your child experienced a Vendor B failure, how long did it take to get reimplanted after the failure was confirmed?  My daughter's first implant (she is bilateral) started acting funny 1 1/2 weeks ago.  The audi got it programmed with the power save function turned off and it worked for another couple of days.  Then it stopped working again and last Friday when we went back to the audi she couldn't get the computer to talk to the internal device at all.  So everyone is on board that it is a Vendor B failure.  We've talked to AB and we expect to hear back tomorrow or Friday what they will cover in regards to the explant and reimplant.  I talked to the surgery scheduler on Monday and she said the first opening in the surgeon's schedule is the beginning of April, unless he can move some people around to accomodate us.  (Which I am pretty sure he will do).  She was going to talk with him and get back with me.  I had to call back again today to follow up and she said that surgery can't even be put on the schedule until 1) until they get the approval back from our insurance company and 2) they get a guarantee letter from AB that the device will be covered.  OK...I get that, but she hasn't even filed the paperwork with the insurance company yet because she has to call someone else to get the wording to put on it...and she's only in this office for 1/2 days so she hasn't had time to call the other person yet and blah, blah, blah.  So, I just wondered what everyone else's timeline has been getting this turned around.  It seems like this process is moving at a snail's pace and it's driving me crazy!  Should this be turned around faster than this or is this typical?  At least she has the other ear to listen with and she's getting by fine with that, so maybe I shouldn't be so anxious. 

Thanks for your help,
Randi







Messages in this topic (5)
________________________________________________________________________
6b. Re: Reimplant after AB vendor B failure
    Posted by: "Ashley Norkus" ashnjayden@gmail.com ashley437
    Date: Wed Jan 27, 2010 1:46 pm ((PST))

When I had a failure in 2005 my implant failed on a Sunday evening, I went
into the audiologist on Monday morning, was schedule for surgery that day,
and had surgery on Thursday morning and was reactivated the following
Wednesday 10 days after my initial failure. I am not bilateral so I was
running on nothing but I still do not think that should matter very much.
I would fight as hard as you can to get her in sooner.
Ashley

On Wed, Jan 27, 2010 at 4:16 PM, katiesmom21501 <rtatro@bellsouth.net>wrote:

>
>
> If your child experienced a Vendor B failure, how long did it take to get
> reimplanted after the failure was confirmed? My daughter's first implant
> (she is bilateral) started acting funny 1 1/2 weeks ago. The audi got it
> programmed with the power save function turned off and it worked for another
> couple of days. Then it stopped working again and last Friday when we went
> back to the audi she couldn't get the computer to talk to the internal
> device at all. So everyone is on board that it is a Vendor B failure. We've
> talked to AB and we expect to hear back tomorrow or Friday what they will
> cover in regards to the explant and reimplant. I talked to the surgery
> scheduler on Monday and she said the first opening in the surgeon's schedule
> is the beginning of April, unless he can move some people around to
> accomodate us. (Which I am pretty sure he will do). She was going to talk
> with him and get back with me. I had to call back again today to follow up
> and she said that surgery can't even be put on the schedule until 1) until
> they get the approval back from our insurance company and 2) they get a
> guarantee letter from AB that the device will be covered. OK...I get that,
> but she hasn't even filed the paperwork with the insurance company yet
> because she has to call someone else to get the wording to put on it...and
> she's only in this office for 1/2 days so she hasn't had time to call the
> other person yet and blah, blah, blah. So, I just wondered what everyone
> else's timeline has been getting this turned around. It seems like this
> process is moving at a snail's pace and it's driving me crazy! Should this
> be turned around faster than this or is this typical? At least she has the
> other ear to listen with and she's getting by fine with that, so maybe I
> shouldn't be so anxious.
>
> Thanks for your help,
> Randi
>
>
>


[Non-text portions of this message have been removed]






Messages in this topic (5)
________________________________________________________________________
6c. Re: Reimplant after AB vendor B failure
    Posted by: "Melissa K. Chaikof" mkchaikof@comcast.net mkchaikof
    Date: Wed Jan 27, 2010 1:51 pm ((PST))

We had a similar situation - failure one morning, at the audiologist a half
hour later, surgery scheduled before we even left for 5 days later.  At that
time, Rachel only had one implant, and so that may have made a difference. 


Melissa Chaikof
Cochlear Awareness Volunteer
Rachel N22 12/89 and BiCI N24C 3/04, Jessica BiCI N22 5/96 left and
N24C 5/04 right, Adam normal hearing
www.auditoryverbalparents.com
www.cochlearimplantonline.com



-----Original Message-----
From: XXXXXXXXXXXXXXXXXXXXXXXX [mailto:XXXXXXXXXXXXXXXXXXXXXXXX] On Behalf
Of Ashley Norkus
Sent: Wednesday, January 27, 2010 4:46 PM
To: XXXXXXXXXXXXXXXXXXXXXXXX
Subject: Re: [cicircle] Reimplant after AB vendor B failure

When I had a failure in 2005 my implant failed on a Sunday evening, I went
into the audiologist on Monday morning, was schedule for surgery that day,
and had surgery on Thursday morning and was reactivated the following
Wednesday 10 days after my initial failure. I am not bilateral so I was
running on nothing but I still do not think that should matter very much.
I would fight as hard as you can to get her in sooner.
Ashley

On Wed, Jan 27, 2010 at 4:16 PM, katiesmom21501 <rtatro@bellsouth.net>wrote:

>
>
> If your child experienced a Vendor B failure, how long did it take to get
> reimplanted after the failure was confirmed? My daughter's first implant
> (she is bilateral) started acting funny 1 1/2 weeks ago. The audi got it
> programmed with the power save function turned off and it worked for
another
> couple of days. Then it stopped working again and last Friday when we went
> back to the audi she couldn't get the computer to talk to the internal
> device at all. So everyone is on board that it is a Vendor B failure.
We've
> talked to AB and we expect to hear back tomorrow or Friday what they will
> cover in regards to the explant and reimplant. I talked to the surgery
> scheduler on Monday and she said the first opening in the surgeon's
schedule
> is the beginning of April, unless he can move some people around to
> accomodate us. (Which I am pretty sure he will do). She was going to talk
> with him and get back with me. I had to call back again today to follow up
> and she said that surgery can't even be put on the schedule until 1) until
> they get the approval back from our insurance company and 2) they get a
> guarantee letter from AB that the device will be covered. OK...I get that,
> but she hasn't even filed the paperwork with the insurance company yet
> because she has to call someone else to get the wording to put on it...and
> she's only in this office for 1/2 days so she hasn't had time to call the
> other person yet and blah, blah, blah. So, I just wondered what everyone
> else's timeline has been getting this turned around. It seems like this
> process is moving at a snail's pace and it's driving me crazy! Should this
> be turned around faster than this or is this typical? At least she has the
> other ear to listen with and she's getting by fine with that, so maybe I
> shouldn't be so anxious.
>
> Thanks for your help,
> Randi
>
>
>


[Non-text portions of this message have been removed]



------------------------------------

Under no circumstances are the comments on this list to be used for
research, publication, etc., without the express consent of the person who
posted. This list is not to be used for commercial purposes.  Yahoo! Groups
Links








Messages in this topic (5)
________________________________________________________________________
6d. Re: Reimplant after AB vendor B failure
    Posted by: "Nicole Hargis" twin00@comcast.net nicolejhargis
    Date: Wed Jan 27, 2010 1:54 pm ((PST))

Once we knew it was an internal failure, we had surgery within a 
week.  Waiting until APril even for a bilateral user is ridiculous.

On Jan 27, 2010, at 3:52 PM, Melissa K. Chaikof wrote:

> We had a similar situation - failure one morning, at the audiologist 
> a half
> hour later, surgery scheduled before we even left for 5 days later. 
> At that
> time, Rachel only had one implant, and so that may have made a 
> difference.
>
> Melissa Chaikof
> Cochlear Awareness Volunteer
> Rachel N22 12/89 and BiCI N24C 3/04, Jessica BiCI N22 5/96 left and
> N24C 5/04 right, Adam normal hearing
> www.auditoryverbalparents.com
> www.cochlearimplantonline.com
>
> -----Original Message-----
> From: XXXXXXXXXXXXXXXXXXXXXXXX [mailto:XXXXXXXXXXXXXXXXXXXXXXXX] On 
> Behalf
> Of Ashley Norkus
> Sent: Wednesday, January 27, 2010 4:46 PM
> To: XXXXXXXXXXXXXXXXXXXXXXXX
> Subject: Re: [cicircle] Reimplant after AB vendor B failure
>
> When I had a failure in 2005 my implant failed on a Sunday evening, 
> I went
> into the audiologist on Monday morning, was schedule for surgery 
> that day,
> and had surgery on Thursday morning and was reactivated the following
> Wednesday 10 days after my initial failure. I am not bilateral so I 
> was
> running on nothing but I still do not think that should matter very 
> much.
> I would fight as hard as you can to get her in sooner.
> Ashley
>
> On Wed, Jan 27, 2010 at 4:16 PM, katiesmom21501 
> <rtatro@bellsouth.net>wrote:
>
> >
> >
> > If your child experienced a Vendor B failure, how long did it take 
> to get
> > reimplanted after the failure was confirmed? My daughter's first 
> implant
> > (she is bilateral) started acting funny 1 1/2 weeks ago. The audi 
> got it
> > programmed with the power save function turned off and it worked for
> another
> > couple of days. Then it stopped working again and last Friday when 
> we went
> > back to the audi she couldn't get the computer to talk to the 
> internal
> > device at all. So everyone is on board that it is a Vendor B 
> failure.
> We've
> > talked to AB and we expect to hear back tomorrow or Friday what 
> they will
> > cover in regards to the explant and reimplant. I talked to the 
> surgery
> > scheduler on Monday and she said the first opening in the surgeon's
> schedule
> > is the beginning of April, unless he can move some people around to
> > accomodate us. (Which I am pretty sure he will do). She was going 
> to talk
> > with him and get back with me. I had to call back again today to 
> follow up
> > and she said that surgery can't even be put on the schedule until 
> 1) until
> > they get the approval back from our insurance company and 2) they 
> get a
> > guarantee letter from AB that the device will be covered. OK...I 
> get that,
> > but she hasn't even filed the paperwork with the insurance company 
> yet
> > because she has to call someone else to get the wording to put on 
> it...and
> > she's only in this office for 1/2 days so she hasn't had time to 
> call the
> > other person yet and blah, blah, blah. So, I just wondered what 
> everyone
> > else's timeline has been getting this turned around. It seems like 
> this
> > process is moving at a snail's pace and it's driving me crazy! 
> Should this
> > be turned around faster than this or is this typical? At least she 
> has the
> > other ear to listen with and she's getting by fine with that, so 
> maybe I
> > shouldn't be so anxious.
> >
> > Thanks for your help,
> > Randi
> >
> >
> >
>
> [Non-text portions of this message have been removed]
>
> ------------------------------------
>
> Under no circumstances are the comments on this list to be used for
> research, publication, etc., without the express consent of the 
> person who
> posted. This list is not to be used for commercial purposes. Yahoo! 
> Groups
> Links
>
>
>



[Non-text portions of this message have been removed]






Messages in this topic (5)
________________________________________________________________________
6e. Re: Reimplant after AB vendor B failure
    Posted by: "Jim Ellis" jde1@psu.edu jimmybaud2000
    Date: Wed Jan 27, 2010 2:47 pm ((PST))

This was the schedule we were promised, if any internal device failed. This
condition, at our hospital, "trumped" any existing surgery schedule.

Best, good luck, hope it works out soon, all those good thoughts going out
to you...

Jim

-----Original Message-----
From: XXXXXXXXXXXXXXXXXXXXXXXX [mailto:XXXXXXXXXXXXXXXXXXXXXXXX] On Behalf
Of Nicole Hargis
Sent: Wednesday, January 27, 2010 4:54 PM
To: XXXXXXXXXXXXXXXXXXXXXXXX
Subject: Re: [cicircle] Reimplant after AB vendor B failure

Once we knew it was an internal failure, we had surgery within a 
week.  Waiting until APril even for a bilateral user is ridiculous.

On Jan 27, 2010, at 3:52 PM, Melissa K. Chaikof wrote:

> We had a similar situation - failure one morning, at the audiologist 
> a half
> hour later, surgery scheduled before we even left for 5 days later. 
> At that
> time, Rachel only had one implant, and so that may have made a 
> difference.
>
> Melissa Chaikof
> Cochlear Awareness Volunteer
> Rachel N22 12/89 and BiCI N24C 3/04, Jessica BiCI N22 5/96 left and
> N24C 5/04 right, Adam normal hearing
> www.auditoryverbalparents.com
> www.cochlearimplantonline.com
>
> -----Original Message-----
> From: XXXXXXXXXXXXXXXXXXXXXXXX [mailto:XXXXXXXXXXXXXXXXXXXXXXXX] On 
> Behalf
> Of Ashley Norkus
> Sent: Wednesday, January 27, 2010 4:46 PM
> To: XXXXXXXXXXXXXXXXXXXXXXXX
> Subject: Re: [cicircle] Reimplant after AB vendor B failure
>
> When I had a failure in 2005 my implant failed on a Sunday evening, 
> I went
> into the audiologist on Monday morning, was schedule for surgery 
> that day,
> and had surgery on Thursday morning and was reactivated the following
> Wednesday 10 days after my initial failure. I am not bilateral so I 
> was
> running on nothing but I still do not think that should matter very 
> much.
> I would fight as hard as you can to get her in sooner.
> Ashley
>
> On Wed, Jan 27, 2010 at 4:16 PM, katiesmom21501 
> <rtatro@bellsouth.net>wrote:
>
> >
> >
> > If your child experienced a Vendor B failure, how long did it take 
> to get
> > reimplanted after the failure was confirmed? My daughter's first 
> implant
> > (she is bilateral) started acting funny 1 1/2 weeks ago. The audi 
> got it
> > programmed with the power save function turned off and it worked for
> another
> > couple of days. Then it stopped working again and last Friday when 
> we went
> > back to the audi she couldn't get the computer to talk to the 
> internal
> > device at all. So everyone is on board that it is a Vendor B 
> failure.
> We've
> > talked to AB and we expect to hear back tomorrow or Friday what 
> they will
> > cover in regards to the explant and reimplant. I talked to the 
> surgery
> > scheduler on Monday and she said the first opening in the surgeon's
> schedule
> > is the beginning of April, unless he can move some people around to
> > accomodate us. (Which I am pretty sure he will do). She was going 
> to talk
> > with him and get back with me. I had to call back again today to 
> follow up
> > and she said that surgery can't even be put on the schedule until 
> 1) until
> > they get the approval back from our insurance company and 2) they 
> get a
> > guarantee letter from AB that the device will be covered. OK...I 
> get that,
> > but she hasn't even filed the paperwork with the insurance company 
> yet
> > because she has to call someone else to get the wording to put on 
> it...and
> > she's only in this office for 1/2 days so she hasn't had time to 
> call the
> > other person yet and blah, blah, blah. So, I just wondered what 
> everyone
> > else's timeline has been getting this turned around. It seems like 
> this
> > process is moving at a snail's pace and it's driving me crazy! 
> Should this
> > be turned around faster than this or is this typical? At least she 
> has the
> > other ear to listen with and she's getting by fine with that, so 
> maybe I
> > shouldn't be so anxious.
> >
> > Thanks for your help,
> > Randi
> >
> >
> >
>
> [Non-text portions of this message have been removed]
>
> ------------------------------------
>
> Under no circumstances are the comments on this list to be used for
> research, publication, etc., without the express consent of the 
> person who
> posted. This list is not to be used for commercial purposes. Yahoo! 
> Groups
> Links
>
>
>



[Non-text portions of this message have been removed]



------------------------------------

Under no circumstances are the comments on this list to be used for
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Messages in this topic (5)
________________________________________________________________________
________________________________________________________________________
7. head tilt after implant
    Posted by: "j harris" jharris1013@yahoo.com jharris1013
    Date: Wed Jan 27, 2010 3:15 pm ((PST))

Hi All,
My son, Ben, was implanted just over a month ago and activated three weeks ago at 12 months.
Now, when he walks, he tilts his head to the side of the implant. About half way to his shoulder.
Have any of you experienced this with your kiddos? Should I be concerned?
 
Thanks, Jen
bensjourneytohear.blogspot.com


     

[Non-text portions of this message have been removed]






Messages in this topic (1)



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