Guest guest Posted September 27, 2006 Report Share Posted September 27, 2006 That is exactly what (our 12 year old daughter) was diagnosed with. We were told that she wasn’t a CI candidate because of the enlarged aqueduct...too much of risk if it were to rupture (commonly referred to as a gusher). It serves to keep balance for the body and if ruptured it can’t be repaired. We’re looking into bone anchored hearing aides now because is having more trouble with one of her ears and it seems that her hearing is better through bone conduction...especially in that ear. Jan (Certainly not an expert) _____ From: Listen-Up [mailto:Listen-Up ] On Behalf Of ckobrien97 Sent: Wednesday, September 27, 2006 7:24 AM To: Listen-Up Subject: My daughter's CT scan results Hi everyone! I wish that I had more time to be a more active member of this group and not post only when I have a question. I have great hope that someday my hands won't be so full and I will be able to contribute more. I do read most posts and silently respond in my head while I have 30 seconds to spare . I wanted to share that my 27 month old daughter had a CT scan last week and the results came in yesterday. I am shocked that we have an answer for her hearing loss- I was convinced that we would never know. Anyway, it turns out that Lily has enlarged vestibular aqueducts and mild dysplasia of the cochlea. I got the results over the phone and have not actually spoken with Lily's doctor yet. I have done some quick searches and the term " Mondini dysplasia/syndrome " and LVAS/EVAS pop up but I have not had time to fully research/comprehend what this means. Just wondering if anyone here is an " expert " on this topic who might give me a quick run-down of what this all means. We are currently in the middle of the CI candidacy process for Lily and I worry now that her cochlea will not be conducive to implantation should she qualify based in her hearing loss. Thanks for any and all info you may have! -Kriste (who is reading with great interest the thread about homeschooling as that has been my plan for my girls since long before I found out about my youngest daughter's hearing loss. glad to see i am in good company. i recently discovered www.deafhomeschool.-com....) -- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.1.405 / Virus Database: 268.12.9/457 - Release Date: 9/26/2006 -- No virus found in this outgoing message. Checked by AVG Free Edition. Version: 7.1.405 / Virus Database: 268.12.9/457 - Release Date: 9/26/2006 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2006 Report Share Posted September 27, 2006 Jan- Thanks for your reply. I wonder if it is a case-by case thing then because I recently met a brother and sister here who have EVAS and both have CIs. The sister was implanted at 18mo and her brother was older- around 11. I appreciate knowing your story though so I know to not be disappointed if we are told she is not a CI candidate. I hope that the bone anchored hearing aides do the trick for your daughter. I see now that I have even more to learn since I have never heard of that.... -Kriste (who wrote the link wrong in her last post, should have been www.deafhomeschool.com) > > That is exactly what (our 12 year old daughter) was diagnosed with. > We were told that she wasn't a CI candidate because of the enlarged > aqueduct...too much of risk if it were to rupture (commonly referred to as a > gusher). It serves to keep balance for the body and if ruptured it can't be > repaired. We're looking into bone anchored hearing aides now because > is having more trouble with one of her ears and it seems that her hearing is > better through bone conduction...especially in that ear. > > > > Jan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2006 Report Share Posted September 27, 2006 I bet it is a case by case thing (as are most things when dealing with hearing impairment)... Hope it works well for you with a CI... Jan _____ From: Listen-Up [mailto:Listen-Up ] On Behalf Of ckobrien97 Sent: Wednesday, September 27, 2006 8:20 AM To: Listen-Up Subject: Re: My daughter's CT scan results Jan- Thanks for your reply. I wonder if it is a case-by case thing then because I recently met a brother and sister here who have EVAS and both have CIs. The sister was implanted at 18mo and her brother was older- around 11. I appreciate knowing your story though so I know to not be disappointed if we are told she is not a CI candidate. I hope that the bone anchored hearing aides do the trick for your daughter. I see now that I have even more to learn since I have never heard of that.... -Kriste (who wrote the link wrong in her last post, should have been www.deafhomeschool.-com) > > That is exactly what (our 12 year old daughter) was diagnosed with. > We were told that she wasn't a CI candidate because of the enlarged > aqueduct...too much of risk if it were to rupture (commonly referred to as a > gusher). It serves to keep balance for the body and if ruptured it can't be > repaired. We're looking into bone anchored hearing aides now because > is having more trouble with one of her ears and it seems that her hearing is > better through bone conduction..-.especially in that ear. > > > > Jan -- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.1.405 / Virus Database: 268.12.9/457 - Release Date: 9/26/2006 -- No virus found in this outgoing message. Checked by AVG Free Edition. Version: 7.1.405 / Virus Database: 268.12.9/457 - Release Date: 9/26/2006 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2006 Report Share Posted September 27, 2006 Hi Kriste, I am a mom to an 8yr old boy who has LVAS. He was dx'd at 3.5 yrs old and fit with bilateral HA's. Currently he is Mod/Sev in the left and Sev/Prof in the right. With his aids, he is functioning very well. We were lucky that he was postlingually deafened and has excellent speech (with the exception that if a " th " is at the end of the word, it has become an " f " ). We belong to a wonderful yahoo group, " LVAS " , which is no end of excellent info with a moderator that has got to have the most knowledge of LVAS we have ever talked to. All the LVAS kids are different in how they react to this. Though no one has ever talked about a " gusher " (that's the first I had ever heard of something like that), we do know that our dr. has said that our son is an " excellent " candidate for a CI if he ever looses everything and there have been many kids on the LVAS list that HAVE had CI's. Please don't totally discount the CI route. We also know that this can be a progressive loss and is can be exacerbated by head trauma and pressure change. For our son, he has lost additional hearing with a tremendous collision with another student head-on. Most came back. Some kids however, loose more hearing on an amusement ride, blowing on a trumpet, riding a car up a mountain or in an airplane. The general idea is to let kids be kids (i.e. no helmets for most), but keep the contact sports to a minimum (no football, soccer etc). Please come over to the LVAS list and find out all sorts of info. There are many theories about what causes LVAS. We don't really have a favorite . We just know this is what we deal with and drive on. Some LVAS kids have Mondini Malformation, some have Pendred's Syndrome. Which came first???? Our son doesn't have any other symptoms and after being in the NIH study in '04, they have listed him as ideopathic LVAS. LVAS can only be dx'd with a CT scan (or MRI). There may be many more kids/adults with this syndrome but just don't know it without the CT scan. But now that you know, more power to your family to keep head bonks to a minimum! Regards, Ginger Half Moon Bay, CA My daughter's CT scan results Hi everyone! I wish that I had more time to be a more active member of this group and not post only when I have a question. I have great hope that someday my hands won't be so full and I will be able to contribute more. I do read most posts and silently respond in my head while I have 30 seconds to spare . I wanted to share that my 27 month old daughter had a CT scan last week and the results came in yesterday. I am shocked that we have an answer for her hearing loss- I was convinced that we would never know. Anyway, it turns out that Lily has enlarged vestibular aqueducts and mild dysplasia of the cochlea. I got the results over the phone and have not actually spoken with Lily's doctor yet. I have done some quick searches and the term " Mondini dysplasia/syndrome " and LVAS/EVAS pop up but I have not had time to fully research/comprehend what this means. Just wondering if anyone here is an " expert " on this topic who might give me a quick run-down of what this all means. We are currently in the middle of the CI candidacy process for Lily and I worry now that her cochlea will not be conducive to implantation should she qualify based in her hearing loss. Thanks for any and all info you may have! -Kriste (who is reading with great interest the thread about homeschooling as that has been my plan for my girls since long before I found out about my youngest daughter's hearing loss. glad to see i am in good company. i recently discovered www.deafhomeschool.com....) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2006 Report Share Posted September 27, 2006 Kriste, My daughter was just diagnosed with the exact same thing almost two weeks ago. She is four and has moderate to severe hearing loss in the higher frequencies so the hearing loss does not seem to affect her TOO much yet, knock on wood. Anyway, there is a yahoo group just for large vestibular aqueduct syndrome and there are several parents with children who have written that their children do have cochlear implants. Best wishes for you and your daughter. Keep us updated on how things go. Jocelyn Jan and Bill s circlebarranch@...> wrote: I bet it is a case by case thing (as are most things when dealing with hearing impairment)... Hope it works well for you with a CI... Jan _____ From: Listen-Up [mailto:Listen-Up ] On Behalf Of ckobrien97 Sent: Wednesday, September 27, 2006 8:20 AM To: Listen-Up Subject: Re: My daughter's CT scan results Jan- Thanks for your reply. I wonder if it is a case-by case thing then because I recently met a brother and sister here who have EVAS and both have CIs. The sister was implanted at 18mo and her brother was older- around 11. I appreciate knowing your story though so I know to not be disappointed if we are told she is not a CI candidate. I hope that the bone anchored hearing aides do the trick for your daughter. I see now that I have even more to learn since I have never heard of that.... -Kriste (who wrote the link wrong in her last post, should have been www.deafhomeschool.-com) > > That is exactly what (our 12 year old daughter) was diagnosed with. > We were told that she wasn't a CI candidate because of the enlarged > aqueduct...too much of risk if it were to rupture (commonly referred to as a > gusher). It serves to keep balance for the body and if ruptured it can't be > repaired. We're looking into bone anchored hearing aides now because > is having more trouble with one of her ears and it seems that her hearing is > better through bone conduction..-.especially in that ear. > > > > Jan -- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.1.405 / Virus Database: 268.12.9/457 - Release Date: 9/26/2006 -- No virus found in this outgoing message. Checked by AVG Free Edition. Version: 7.1.405 / Virus Database: 268.12.9/457 - Release Date: 9/26/2006 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2006 Report Share Posted September 27, 2006 There is another Yahoo Group that is specific to LVAS - http://health.groups.yahoo.com/group/LVAS/ - you might get additional answers by posting there. Good luck! Sherry My daughter's CT scan results Hi everyone! I wish that I had more time to be a more active member of this group and not post only when I have a question. I have great hope that someday my hands won't be so full and I will be able to contribute more. I do read most posts and silently respond in my head while I have 30 seconds to spare . I wanted to share that my 27 month old daughter had a CT scan last week and the results came in yesterday. I am shocked that we have an answer for her hearing loss- I was convinced that we would never know. Anyway, it turns out that Lily has enlarged vestibular aqueducts and mild dysplasia of the cochlea. I got the results over the phone and have not actually spoken with Lily's doctor yet. I have done some quick searches and the term " Mondini dysplasia/syndrome " and LVAS/EVAS pop up but I have not had time to fully research/comprehend what this means. Just wondering if anyone here is an " expert " on this topic who might give me a quick run-down of what this all means. We are currently in the middle of the CI candidacy process for Lily and I worry now that her cochlea will not be conducive to implantation should she qualify based in her hearing loss. Thanks for any and all info you may have! -Kriste (who is reading with great interest the thread about homeschooling as that has been my plan for my girls since long before I found out about my youngest daughter's hearing loss. glad to see i am in good company. i recently discovered www.deafhomeschool.com....) All messages posted to this list are private and confidential. Each post is the intellectual property of the author and therefore subject to copyright restrictions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2006 Report Share Posted September 27, 2006 Ginger- Can you please elaborate on the LVAS list? Sounds VERY interesting...we too were told to watch the head bumps... Jan _____ From: Listen-Up [mailto:Listen-Up ] On Behalf Of Ginger Cutter Sent: Wednesday, September 27, 2006 9:06 AM To: Listen-Up Subject: Re: My daughter's CT scan results Hi Kriste, I am a mom to an 8yr old boy who has LVAS. He was dx'd at 3.5 yrs old and fit with bilateral HA's. Currently he is Mod/Sev in the left and Sev/Prof in the right. With his aids, he is functioning very well. We were lucky that he was postlingually deafened and has excellent speech (with the exception that if a " th " is at the end of the word, it has become an " f " ). We belong to a wonderful yahoo group, " LVAS " , which is no end of excellent info with a moderator that has got to have the most knowledge of LVAS we have ever talked to. All the LVAS kids are different in how they react to this. Though no one has ever talked about a " gusher " (that's the first I had ever heard of something like that), we do know that our dr. has said that our son is an " excellent " candidate for a CI if he ever looses everything and there have been many kids on the LVAS list that HAVE had CI's. Please don't totally discount the CI route. We also know that this can be a progressive loss and is can be exacerbated by head trauma and pressure change. For our son, he has lost additional hearing with a tremendous collision with another student head-on. Most came back. Some kids however, loose more hearing on an amusement ride, blowing on a trumpet, riding a car up a mountain or in an airplane. The general idea is to let kids be kids (i.e. no helmets for most), but keep the contact sports to a minimum (no football, soccer etc). Please come over to the LVAS list and find out all sorts of info. There are many theories about what causes LVAS. We don't really have a favorite . We just know this is what we deal with and drive on. Some LVAS kids have Mondini Malformation, some have Pendred's Syndrome. Which came first???? Our son doesn't have any other symptoms and after being in the NIH study in '04, they have listed him as ideopathic LVAS. LVAS can only be dx'd with a CT scan (or MRI). There may be many more kids/adults with this syndrome but just don't know it without the CT scan. But now that you know, more power to your family to keep head bonks to a minimum! Regards, Ginger Half Moon Bay, CA My daughter's CT scan results Hi everyone! I wish that I had more time to be a more active member of this group and not post only when I have a question. I have great hope that someday my hands won't be so full and I will be able to contribute more. I do read most posts and silently respond in my head while I have 30 seconds to spare . I wanted to share that my 27 month old daughter had a CT scan last week and the results came in yesterday. I am shocked that we have an answer for her hearing loss- I was convinced that we would never know. Anyway, it turns out that Lily has enlarged vestibular aqueducts and mild dysplasia of the cochlea. I got the results over the phone and have not actually spoken with Lily's doctor yet. I have done some quick searches and the term " Mondini dysplasia/syndrome " and LVAS/EVAS pop up but I have not had time to fully research/comprehend what this means. Just wondering if anyone here is an " expert " on this topic who might give me a quick run-down of what this all means. We are currently in the middle of the CI candidacy process for Lily and I worry now that her cochlea will not be conducive to implantation should she qualify based in her hearing loss. Thanks for any and all info you may have! -Kriste (who is reading with great interest the thread about homeschooling as that has been my plan for my girls since long before I found out about my youngest daughter's hearing loss. glad to see i am in good company. i recently discovered www.deafhomeschool.-com....) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2006 Report Share Posted September 27, 2006 Sure - I believe you just go to groups.yahoo.com and search for LVAS. That should find the new group. Join up and join us! My daughter's CT scan results Hi everyone! I wish that I had more time to be a more active member of this group and not post only when I have a question. I have great hope that someday my hands won't be so full and I will be able to contribute more. I do read most posts and silently respond in my head while I have 30 seconds to spare . I wanted to share that my 27 month old daughter had a CT scan last week and the results came in yesterday. I am shocked that we have an answer for her hearing loss- I was convinced that we would never know. Anyway, it turns out that Lily has enlarged vestibular aqueducts and mild dysplasia of the cochlea. I got the results over the phone and have not actually spoken with Lily's doctor yet. I have done some quick searches and the term " Mondini dysplasia/syndrome " and LVAS/EVAS pop up but I have not had time to fully research/comprehend what this means. Just wondering if anyone here is an " expert " on this topic who might give me a quick run-down of what this all means. We are currently in the middle of the CI candidacy process for Lily and I worry now that her cochlea will not be conducive to implantation should she qualify based in her hearing loss. Thanks for any and all info you may have! -Kriste (who is reading with great interest the thread about homeschooling as that has been my plan for my girls since long before I found out about my youngest daughter's hearing loss. glad to see i am in good company. i recently discovered www.deafhomeschool.-com....) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2006 Report Share Posted September 27, 2006 Hi Ginger and Kriste, I am also on the LVAS group. The moderator is Dr. Neil Bauman and he has a website at www.hearinglosshelp.org If you go there, you can search his archives and you will find his article from 2002 that he wrote on LVAS. It is the most comprehensive information available on LVAS. However, I think Neil will be the first to admit, a lot of it is educated speculation. We are all waiting for the results from the NIH study, and hope it will shed some light. Interesting that they classified your son's LVAS as idiopathic. I would have thought all cases of LVAS were idiopathic, as I have never read anything indicating a cause for the condition. My son is also a candidate for CI if his loss ever warrants it. We did have a discussion on " gushers " but not in regard to the CI. The context was in regards to repairing his fixed stapes bone. This is a common surgery and very successful, but they will not do it for patients with LVAS because of the risk of the " gusher " which would result in complete deafness. Regards, Tracey > > Hi Kriste, > > I am a mom to an 8yr old boy who has LVAS. He was dx'd at 3.5 yrs old and fit with bilateral HA's. Currently he is Mod/Sev in the left and Sev/Prof in the right. With his aids, he is functioning very well. We were lucky that he was postlingually deafened and has excellent speech (with the exception that if a " th " is at the end of the word, it has become an " f " ). We belong to a wonderful yahoo group, " LVAS " , which is no end of excellent info with a moderator that has got to have the most knowledge of LVAS we have ever talked to. > > All the LVAS kids are different in how they react to this. Though no one has ever talked about a " gusher " (that's the first I had ever heard of something like that), we do know that our dr. has said that our son is an " excellent " candidate for a CI if he ever looses everything and there have been many kids on the LVAS list that HAVE had CI's. Please don't totally discount the CI route. > > We also know that this can be a progressive loss and is can be exacerbated by head trauma and pressure change. For our son, he has lost additional hearing with a tremendous collision with another student head-on. Most came back. Some kids however, loose more hearing on an amusement ride, blowing on a trumpet, riding a car up a mountain or in an airplane. The general idea is to let kids be kids (i.e. no helmets for most), but keep the contact sports to a minimum (no football, soccer etc). Please come over to the LVAS list and find out all sorts of info. > > There are many theories about what causes LVAS. We don't really have a favorite . We just know this is what we deal with and drive on. Some LVAS kids have Mondini Malformation, some have Pendred's Syndrome. Which came first???? Our son doesn't have any other symptoms and after being in the NIH study in '04, they have listed him as ideopathic LVAS. LVAS can only be dx'd with a CT scan (or MRI). There may be many more kids/adults with this syndrome but just don't know it without the CT scan. But now that you know, more power to your family to keep head bonks to a minimum! > > Regards, > Ginger > Half Moon Bay, CA > My daughter's CT scan results > > > Hi everyone! I wish that I had more time to be a more active member > of this group and not post only when I have a question. I have great > hope that someday my hands won't be so full and I will be able to > contribute more. I do read most posts and silently respond in my head > while I have 30 seconds to spare . I wanted to share that my 27 > month old daughter had a CT scan last week and the results came in > yesterday. I am shocked that we have an answer for her hearing loss- > I was convinced that we would never know. Anyway, it turns out that > Lily has enlarged vestibular aqueducts and mild dysplasia of the > cochlea. I got the results over the phone and have not actually > spoken with Lily's doctor yet. I have done some quick searches and > the term " Mondini dysplasia/syndrome " and LVAS/EVAS pop up but I have > not had time to fully research/comprehend what this means. Just > wondering if anyone here is an " expert " on this topic who might give > me a quick run-down of what this all means. We are currently in the > middle of the CI candidacy process for Lily and I worry now that her > cochlea will not be conducive to implantation should she qualify based > in her hearing loss. Thanks for any and all info you may have! > > -Kriste (who is reading with great interest the thread about > homeschooling as that has been my plan for my girls since long before > I found out about my youngest daughter's hearing loss. glad to see i > am in good company. i recently discovered www.deafhomeschool.com....) > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2006 Report Share Posted September 27, 2006 Jan, Did you get a second opinion on the CI? Our surgeon said he had done hundreds of these and never had a gusher. And I don't think they cause irreparable harm. There are also several studies now that say CIs are safe for LVAS kids (you can find them on pubmed). Janet Mom to Sofie, 7, bilateral LVAS, implanted 4/06 > > That is exactly what (our 12 year old daughter) was diagnosed with. > We were told that she wasn't a CI candidate because of the enlarged > aqueduct...too much of risk if it were to rupture (commonly referred to as a > gusher). It serves to keep balance for the body and if ruptured it can't be > repaired. We're looking into bone anchored hearing aides now because > is having more trouble with one of her ears and it seems that her hearing is > better through bone conduction...especially in that ear. > > > > Jan > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2006 Report Share Posted September 27, 2006 Jan, Did you get a second opinion on the CI? Our surgeon said he had done hundreds of these and never had a gusher. And I don't think they cause irreparable harm. There are also several studies now that say CIs are safe for LVAS kids (you can find them on pubmed). Janet Mom to Sofie, 7, bilateral LVAS, implanted 4/06 > > That is exactly what (our 12 year old daughter) was diagnosed with. > We were told that she wasn't a CI candidate because of the enlarged > aqueduct...too much of risk if it were to rupture (commonly referred to as a > gusher). It serves to keep balance for the body and if ruptured it can't be > repaired. We're looking into bone anchored hearing aides now because > is having more trouble with one of her ears and it seems that her hearing is > better through bone conduction...especially in that ear. > > > > Jan > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2006 Report Share Posted September 27, 2006 Jan, Did you get a second opinion on the CI? Our surgeon said he had done hundreds of these and never had a gusher. And I don't think they cause irreparable harm. There are also several studies now that say CIs are safe for LVAS kids (you can find them on pubmed). Janet Mom to Sofie, 7, bilateral LVAS, implanted 4/06 > > That is exactly what (our 12 year old daughter) was diagnosed with. > We were told that she wasn't a CI candidate because of the enlarged > aqueduct...too much of risk if it were to rupture (commonly referred to as a > gusher). It serves to keep balance for the body and if ruptured it can't be > repaired. We're looking into bone anchored hearing aides now because > is having more trouble with one of her ears and it seems that her hearing is > better through bone conduction...especially in that ear. > > > > Jan > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2006 Report Share Posted September 27, 2006 Haven’t been to any ‘big’ doctors in a few years. We’re looking at going to another doctor to look at the Bone anchored hearing aides and will ask then...difficulty is our location in the rocky mtn region (south eastern Montana)...not too many ‘differing’ opinions around here...To get to a doctor that handles any type of surgery of this type is a 9-11 hour drive...but heck, my kids drive over an hour to get to school each day... Jan _____ From: Listen-Up [mailto:Listen-Up ] On Behalf Of janetlizard Sent: Wednesday, September 27, 2006 3:51 PM To: Listen-Up Subject: Re: My daughter's CT scan results Jan, Did you get a second opinion on the CI? Our surgeon said he had done hundreds of these and never had a gusher. And I don't think they cause irreparable harm. There are also several studies now that say CIs are safe for LVAS kids (you can find them on pubmed). Janet Mom to Sofie, 7, bilateral LVAS, implanted 4/06 > > That is exactly what (our 12 year old daughter) was diagnosed with. > We were told that she wasn't a CI candidate because of the enlarged > aqueduct...too much of risk if it were to rupture (commonly referred to as a > gusher). It serves to keep balance for the body and if ruptured it can't be > repaired. We're looking into bone anchored hearing aides now because > is having more trouble with one of her ears and it seems that her hearing is > better through bone conduction..-.especially in that ear. > > > > Jan > -- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.1.405 / Virus Database: 268.12.9/457 - Release Date: 9/26/2006 -- No virus found in this outgoing message. Checked by AVG Free Edition. Version: 7.1.405 / Virus Database: 268.12.9/457 - Release Date: 9/26/2006 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2006 Report Share Posted September 27, 2006 Haven’t been to any ‘big’ doctors in a few years. We’re looking at going to another doctor to look at the Bone anchored hearing aides and will ask then...difficulty is our location in the rocky mtn region (south eastern Montana)...not too many ‘differing’ opinions around here...To get to a doctor that handles any type of surgery of this type is a 9-11 hour drive...but heck, my kids drive over an hour to get to school each day... Jan _____ From: Listen-Up [mailto:Listen-Up ] On Behalf Of janetlizard Sent: Wednesday, September 27, 2006 3:51 PM To: Listen-Up Subject: Re: My daughter's CT scan results Jan, Did you get a second opinion on the CI? Our surgeon said he had done hundreds of these and never had a gusher. And I don't think they cause irreparable harm. There are also several studies now that say CIs are safe for LVAS kids (you can find them on pubmed). Janet Mom to Sofie, 7, bilateral LVAS, implanted 4/06 > > That is exactly what (our 12 year old daughter) was diagnosed with. > We were told that she wasn't a CI candidate because of the enlarged > aqueduct...too much of risk if it were to rupture (commonly referred to as a > gusher). It serves to keep balance for the body and if ruptured it can't be > repaired. We're looking into bone anchored hearing aides now because > is having more trouble with one of her ears and it seems that her hearing is > better through bone conduction..-.especially in that ear. > > > > Jan > -- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.1.405 / Virus Database: 268.12.9/457 - Release Date: 9/26/2006 -- No virus found in this outgoing message. Checked by AVG Free Edition. Version: 7.1.405 / Virus Database: 268.12.9/457 - Release Date: 9/26/2006 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2006 Report Share Posted September 27, 2006 Thank you so much everyone. I did find the LVAS group and joined but haven't had chance to look around there yet. Jocelyn- Do you think that your daughter's loss has been slowly progressive and that is why it has not affected her speech and language (meaning that she had enough hearing during crucial early years)? Lily is so very behind and so hard to understand. I read all day about minimizing head trauma, avoiding air travel, etc- I cannot tell you how many times my maniac girl slipped and conked her head on our hard tile floors when she was learning to walk. Maybe I should have put that helmet on that I always threatened to put on her. I am feeling irrationally responsible for the level of her hearing loss because I didn't/couldn't prevent her from falling so much when she was younger. It is the weirdest thing to know why Lily has hearing loss. I really and truly thought we would never know. And this strange sense of guilt is just hanging over me today. So irrational, I know, but I just can't help but think that some defective part of me (and my husband) caused this. I know with time I will move past this stage but that is where I am tonight... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2006 Report Share Posted September 28, 2006 Argh, that LVAS guilt! This is the one disorder where they actually say you may be able to prevent further hearing loss. This MAY be true for some kids with LVAS - those who lost hearing after running into a wall or something. For many others with this disorder, the hearing loss progresses in a stepwise fashion that has nothing to do with inattentive parenting. My daughter lost everything once while she was having a BM, for goodness sake. (The hearing returned soon after.) How do you prevent that? Like Lily, most of Sofie's loss was prelingual. I used sign and cued speech to give her what she needed until her auditory skills took off. Her language has grown tremendously (she is on grade level now), but things didn't really start progressing until age 5 or so. Just focus your energy on the work that needs to be done and stop beating yourself up! Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2006 Report Share Posted September 28, 2006 Wow! That is remote. What is the nearest center? I was thinking today that the info you received might have been what was generally believed at the time you received it. It's just not accurate any longer. At what level is her hearing loss? A concern I would have with BAHA and LVAS is that the LVAS would progress again, and then you'd have to switch to CI anyway. Does she have a history of frequent progression? I'm butting in because a lot of doctors and audis don't really understand LVAS - they'll aid for current loss, for example, without taking into account the likelihood of progression. CI science has also come very far in the last few years. Just some things to think about. Janet > > Haven't been to any `big' doctors in a few years. We're looking at going to > another doctor to look at the Bone anchored hearing aides and will ask > then...difficulty is our location in the rocky mtn region (south eastern > Montana)...not too many `differing' opinions around here...To get to a > doctor that handles any type of surgery of this type is a 9-11 hour > drive...but heck, my kids drive over an hour to get to school each day... > > Jan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2006 Report Share Posted September 28, 2006 Yea, we’re pretty remote...have to travel 25 miles for a gallon of milk and pay through the nose for that. Best thing is I can keep track of my kids all the time :-). We have traveled to Denver for the first ‘real’ evaluation (9 hours). There is also another doctor in Missoula who does CI and BAHA, but we have ventured that direction (again 9-10 hours). She is moderate in one ear and moderate to profound in the other. Her hearing does fluctuate though and we’re noticing one ear is probably starting to drop off and tends to be staying there. She is extremely active...rides horses (with a helmet) and will start endurance riding next year (25-50 mile rides), plays basketball, etc. Typical ranch kid (girl) with a snake in one pocket and mascara in the other. Like I said, we almost have to get out of our ‘little’ world here to get different opinions on what is available...I’m going to get on the LVAS group...sounds like more help that direction... Thanks, Jan _____ From: Listen-Up [mailto:Listen-Up ] On Behalf Of janetlizard Sent: Thursday, September 28, 2006 10:11 AM To: Listen-Up Subject: Re: My daughter's CT scan results Wow! That is remote. What is the nearest center? I was thinking today that the info you received might have been what was generally believed at the time you received it. It's just not accurate any longer. At what level is her hearing loss? A concern I would have with BAHA and LVAS is that the LVAS would progress again, and then you'd have to switch to CI anyway. Does she have a history of frequent progression? I'm butting in because a lot of doctors and audis don't really understand LVAS - they'll aid for current loss, for example, without taking into account the likelihood of progression. CI science has also come very far in the last few years. Just some things to think about. Janet > > Haven't been to any `big' doctors in a few years. We're looking at going to > another doctor to look at the Bone anchored hearing aides and will ask > then...difficulty is our location in the rocky mtn region (south eastern > Montana)...not too many `differing' opinions around here...To get to a > doctor that handles any type of surgery of this type is a 9-11 hour > drive...but heck, my kids drive over an hour to get to school each day... > > Jan -- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.1.407 / Virus Database: 268.12.9/458 - Release Date: 9/27/2006 -- No virus found in this outgoing message. Checked by AVG Free Edition. Version: 7.1.407 / Virus Database: 268.12.9/458 - Release Date: 9/27/2006 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2006 Report Share Posted September 30, 2006 " I totally know what you mean. I still feel the same way. When the doctor called me two weeks ago with my daughter's CT scan results I just hung up the phone and cried. I felt like it was my fault, and I still do, even though i know I would never do anything to hurt her. " Jocelyn- So you do know exactly how I feel! I stuffed my tears after I heard the news as my girls were nearby but I felt like I was going to crumple to the floor. I haven't really had a chance to cry about this yet. Wish it were as easy to schedule time for tears as it is for other things in life . Kind of wish I had gone ahead and let it out when they first welled up in my eyes. I am very curious about the dizziness and vertigo and when you discovered it. I will have to ask more about it on the LVAS group... Janet- Thank you for your words. I know logically that there is no fault here but somehow it still hurts. I also appreciate hearing how you dealt with the early days when communication was challenging. I am encouraged to hear that your daughter is doing so well now. If we can just get through the next couple of years, I know that I will look back on this time as the hardest time... > > Argh, that LVAS guilt! This is the one disorder where they actually say you may be able to > prevent further hearing loss. This MAY be true for some kids with LVAS - those who lost > hearing after running into a wall or something. For many others with this disorder, the > hearing loss progresses in a stepwise fashion that has nothing to do with inattentive > parenting. My daughter lost everything once while she was having a BM, for goodness sake. > (The hearing returned soon after.) How do you prevent that? Like Lily, most of Sofie's loss was > prelingual. I used sign and cued speech to give her what she needed until her auditory skills > took off. Her language has grown tremendously (she is on grade level now), but things didn't > really start progressing until age 5 or so. Just focus your energy on the work that needs to be > done and stop beating yourself up! > Janet > Quote Link to comment Share on other sites More sharing options...
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