Guest guest Posted July 29, 2002 Report Share Posted July 29, 2002 Hi Amy, My son has atresia and microtia of the right side also. He has a small ear and I was told to leave (other than canalplasty) it as it is. I have concerns that enlarging the ear could make it look misshaped. It is perfectly shaped, but small. He is aware and wishes it would grow, but if we have his hearing restored, I believe this issue will eventually fade. I think your daughter's ears looked fine. I feel fortunate that will not go through reconstruction. One less worry. I am happy with his small ear, and he will come to accept it once he understands the alternative. He is seven. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2002 Report Share Posted July 29, 2002 Sheri, Thanks so much for the BOR syndrome information. My son is seven with microtia atresia. I don't believe he has ever been tested for this. He has had a cardiology work up because he has a heart murmur, but not BOR. Are there any symptoms? What is this syndrome? This is the first I have heard of it. Thanks, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2002 Report Share Posted July 29, 2002 Thanks Sheri, It is always good to know all you can, especially when your child has a birth defect. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2002 Report Share Posted July 29, 2002 --- Hi, I'm not an expert by any means... In fact, I'm new to this because my son Brennen was just diagnosed a few weeks ago and he's only five months old. But, if you ask me, your daughter has beautiful ears. To my untrained eye, I wouldn't have noticed any differences between the pictures. But, I'm not an expert. Also, if you don't feel comfortable with the answers your current doctor has given you, or you feel like they're brushing you off, by all means seek a second and third opinion. I know - I'm not really that much help, sorry. Take care, Crystal Brennen 02/07/02 - Unilateral right side microtia grade II and aural atresia (no openings) In AtresiaMicrotia@y..., " amy rodriguez " wrote: > Hi! I have taken a couple of pix of Iris's ears, she has bilateral atresia (with small opening, stenosis...) and unilateral microtia on her right side, grade 1 I think...She had a skin tag about the size of a large pea in front of the right microtic ear, but the doctors removed it when she was 2 weeks old... They also said that her microtia is so mild they would not pursue reconstruction, in fact, they never even mentioned it, I had to ask about it, they also never told me the terms microtia or atresia and never did genetic testing on her, although there are two other kids on my mom's side with birth defects involving the ear (i don't know the details), Would you kindly look at her pictures and tell me if you agree about the reconstruction? I think I need a new doctor, but the only craniofacial surgeon in this area doesn't accept medicaid, my husband is a nursing student and the kids are on medicaid for now...I am thinking that by the time she is 4 or 5 she will be on a regular insurance plan, so there is hope... I am also worried because the doctors never mentioned using a bone conducting hearing aid, she has had hearing tests done and the people who performed the tests were concerned but the ENT just blew it off, should I be taking her to an audiologist or is this who performs the hearing test??? thanx for any advice! Amy > p.s. If I could afford it I'd be going to NY for that meeting with Dr. J and Dr. Brent!!! > > > normal left ear: > http://photo.msn.s8.com/MS8zLzAvMS8xMDMwLzE1NS8zMi9rQWNpU2p1Y3NaOXZnZG p4U2NYVDJn/19f14a9d80a61430f8d34737e9090e24/clbk=HcZNnT9kkUjlZQ!vIW6YJ EHWzVc6vTjUmnzCLZwITPDKADcdU8KAEIyqcGQg1ULsrnOkSKwiiRA$/jpg.jpg > > microtic right ear: > http://photo.msn.s8.com/MS8zLzAvMS8xMDMwLzE1NS8zMi94MldzUmFHOUpaMFpLTG VFUnFUY1ZR/19ad4ef29ff438ddce311d6e4dd7d384/clbk=HcZNnT9kkUjlZQ!vIW6YJ EHWzVc6vTjUgTba0rBjISSXaQVYepQOtQjYosuGhHlatVC3LKUoOaw$/jpg.jpg > > front view: > http://photo.msn.s8.com/MS8zLzAvMS8xMDMwLzE1NS8zMi9oTkRGeHotTXFkeFMtMG ZuWjRUOF9R/758896cb2555d11f572193b74d07a05c/clbk=HcZNnT9kkUjlZQ!vIW6YJ EHWzVc6vTjULOZD4ah1uhh5uy5ZphDXucLgFgTdCg*lBv*7EE1jPzc$/jpg.jpg > > another, not as good for comparison: > http://photo.msn.s8.com/MS8zLzAvMS8xMDMwLzE1NS8zMi9weldzUEhnaXhsWmM1Rz RYR09KTWh3/02ea3441d0b83bf0da79c03919286c7a/clbk=HcZNnT9kkUjlZQ!vIW6YJ EHWzVc6vTjUH*ZDF0EfqRLKMOzKHUsS2Vo2OwQEw2rOlBY9DWHv*NU$/jpg.jpg > > ~**amy**~ > >^..^< Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2002 Report Share Posted July 29, 2002 Amy, Your daughters ears look very similar to my daughters (Patty, age 10). You are right in that Dr. Brent is currently saying that with current technology, these types of microtias cannot be repaired -- the microtic ears Iris and Patty have right now look better than anything he can construct. So I would agree about the reconstruction. Dr. Brent feels that once cartilege can be cloned into specific shapes, then these types of microtia can be repaired. This research is underway and should be available during our children's childhoods. However, I would be concerned about your daughters hearing. The audiologists really are the right ones to make the calls about hearing aids, not the ENTs. We see the top ENT at Stanford and he says that he would never contradict a hearing aid recommendation made by his top audiologist. Also, if you have others in your family with hearing problems, and *especially* if anyone in your family has kidney problems, I would demand a kidney work up to rule out BOR Syndrome, which is a genetic source of microtia. If your ENT won't do it, ask your pediatrician. The genetic tests for BOR Syndrome just aren't that good at this point to do it by blood work alone, ask for a kidney ultrasound, a urinalysis with a protein / creatinine ratio and a BUN blood test. Sheri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2002 Report Share Posted July 29, 2002 Hi! I have taken a couple of pix of Iris's ears, she has bilateral atresia (with small opening, stenosis...) and unilateral microtia on her right side, grade 1 I think...She had a skin tag about the size of a large pea in front of the right microtic ear, but the doctors removed it when she was 2 weeks old... They also said that her microtia is so mild they would not pursue reconstruction, in fact, they never even mentioned it, I had to ask about it, they also never told me the terms microtia or atresia and never did genetic testing on her, although there are two other kids on my mom's side with birth defects involving the ear (i don't know the details), Would you kindly look at her pictures and tell me if you agree about the reconstruction? The choice of whether to do reconstruction or not varies from family to family. What is right for you may not be right for someone else. Best advice is to learn as much about it as you can, and the various methods of reconstruction, and then follow your gut feelings. We have chosen not to have 's ears reconstructed (Grade II bilateral Microtia) at this time. Many on this list have chosen do have their (son's/daughter's) ears reconstructed. That being said, I must agree with Crystal, your daughters ear is really not noticeable. 's ears are much smaller, and people seldom notice (although he does have a hearing aid, which they do notice). I think I need a new doctor, but the only craniofacial surgeon in this area doesn't accept medicaid, my husband is a nursing student and the kids are on medicaid for now...I am thinking that by the time she is 4 or 5 she will be on a regular insurance plan, so there is hope... I am also worried because the doctors never mentioned using a bone conducting hearing aid, she has had hearing tests done and the people who performed the tests were concerned but the ENT just blew it off, should I be taking her to an audiologist or is this who performs the hearing test??? Usually it is an audiologist who performs hearing tests. What are her hearing test results? In general, if a child has bilateral atresia, they should have a BCHA. (Although it sounds like your daughter doesn't have atresia, but bilateral Stenosis, this can be very different. It is the hearing tests that will tell you if she should have a BCHA or not). How old is she? How is her speech developing? Steve Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2002 Report Share Posted July 29, 2002 BOR Syndrome is an autosomal dominant syndrome with three components -- hearing problems (including microtia and atresia, amongst others), kidney problems, and malformations of the skin on the neck and ears. Generally, when a child has BOR syndrome, someone else in the family also has it -- which means other relatives have hearing problems or kidney problems or skin lesions on their necks. BOR Syndrome is highly variable, which means that not all the symptoms show up the same way in all the people. Common symptoms can include protein in the urine, balance problems (due to inner ear malformations), and nerve based hearing loss in addition to the conductive loss from the microtia and atresia. Let me know if you have any questions. Sheri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2002 Report Share Posted July 30, 2002 Hi! Your daughters ear looks like mine! (except I'm bilateral). Neither of my ears are " perfectly " formed in the technical sense, and my left ear is smaller than my right ear. Noone ever notices (even with my hair up). I am perfectly comfortable with the appearance of my ears, and while it is considered grade 1 microtia, you may notice I rarely address microtia posts because I have so little experience with it. Even if it could be surgically corrected, I personally would not do it. If you want to see my ears go to my website at: http://www.mc.edu/campus/users/bporter/atresiapics.html Bethany Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2002 Report Share Posted August 1, 2002 Thank you for your reply! It helps me! I just want to be sure I am making the right decisions for her and she will be happy! I know she is lucky to have the mild microtia! Amy R > Hi! > > Your daughters ear looks like mine! (except I'm bilateral). Neither of my ears are " perfectly " formed in the technical sense, and my left ear is smaller than my right ear. Noone ever notices (even with my hair up). I am perfectly comfortable with the appearance of my ears, and while it is considered grade 1 microtia, you may notice I rarely address microtia posts because I have so little experience with it. Even if it could be surgically corrected, I personally would not do it. If you want to see my ears go to my website at: > > http://www.mc.edu/campus/users/bporter/atresiapics.html > > Bethany Quote Link to comment Share on other sites More sharing options...
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