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44 recommendations and reviews from 7 people
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Referral from
April 29, 2014
Tarra M. asked:I am in need of some guidance... My 4 year old son, Tai has grade 3 unilateral MA. The doctors we have been consulting give me the feeling they are "winging it".... and don't really have the experience to help us or put us in the right direction. He has had audiograms done every 6 months and is shows hearing loss in his functioning ear, yet not conversation about the BAHA even after I made an appointment to discuss that option. They say he is too young for the MRI to see what hearing bones are present in his little ear. He is very farsighted, and requires glasses (which is a battle on its own...) His jaws are severely misaligned... I just feel like I am not getting anywhere and he is getting worse. my question is... "Who do you consult about your child's Microtia and discuss the best way to help them? Plastic surgeon, Pediatrician, specialist???" My son's speech is delayed and is dealing with hearing loss in his functioning ear due to severe ear infections.... I am located in Salt Lake City, Utah.Tarra M. replied:Thank you so much for your response. It amazes me how little information I have been given about resources and services. It's been an emotional ride to say the least. I would appreciate any contact information. And many thanks for pointing me to earcommunity.com. I have left a message for the craniofacial clinic at primary children's hospital in salt lake city. I'm hoping the have more answers than questions soon and I'm so grateful I decided to post on the support Microtia and Atresia Support Group, as I feel like I might finally get some help for my son.
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Referral from
January 10, 2014
Microtia G. asked:This post comes to us from Nikki: We live in the northeast- Ny and PA border. Can anyone recommend a good dr for us. Our almost 8 yr old daughter has level 2 microtia/artresia of the left. She had her 1st surgery at 5 to open the canal and repair the internal- internal was a success, canal closed back up. 2nd surgery was Nov. 26th- canal is nearly closed. I am beside myself. She loves sports- soccer and basketball and we went for the 2nd surgery in hopes that reopening the canal she would be able to hear and would be able to excel at the sports that she so loves. She heard for about 4 months after the 1st surgery before the canal closed......any suggestions or where we should go. We are traveling now- 3 hrs to get to the current surgeon, but if there is someplace better,I want to be there. I feel like we have done her wrong- 1st dr. was ok but transferred away, her replacement only cared about the plastics and we are more concerned about the hearing, almost prefer to let her make the decision to do the plastics. Current dr is a super man, but 2 surgeries with out success has me numb. I hoave heard Boston.....thank you for your help. Thanks. MelissaMicrotia G. replied:Hi Nikki, you can visit our website and look through our global list of surgeons. There are surgeons in NY who specialize in ENT and plastic surgery for Micortia/Atresia. Here is the link: http://earcommunity.com/.../surg.../global-list-of-surgeons/ Also, on our website forum you will also find a list of ENTs and you may find one in your neck of the woods as I know some are listed. Hope this helps. MelissaTilly L. replied:Hi! My daughter is 2 and we're just now starting to explore all surgical options, from atresia repair first, then microtia, both at same time, or just microtia/reconstruction. I'm hosting one of the Ear Community Picnics this summer, and we hope to have Dr. Kesser at our picnic in Maryland. I would love to know any experience anyone has had with him as well, and am excited to meet him and ask my own questions...good luck to you in your search. So sorry to hear that her canal has closed, I've been hearing more and more of that happening.....Susan C. replied:We haven't had the canal surgery yet, but we are looking at dr kesser. His contact info is on the ear community website.
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Referral from
October 10, 2013
Microtia G. asked:This question comes from Valerie Vahdat: Hello Everyone. My son is 5 and has microtia and atresia. We were always told reconstruction couldn't happen until he was around 8. As I do some more research I've found out differently. We live in a smallish town in Oregon. Anyone have any suggestions on where to start looking for options for him? Doctor recommendations? Thanks. - MelissaMicrotia G. replied:www.EarCommunity.comMarie L. replied:I agree. Please go to Melissa's Ear Community website. btw, welcome. My daughter was born with Left Sided Microtia Atresia. She's now in college and doing well. Had reconstructive rib graft surgery x 3 stages, but never had any hearing assistance. Even...See More
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Referral from
September 19, 2013
Sarah B. asked:Hello everyone! I'm so glad to find this group, thanks for all the info that you've posted so far. I have a six month old baby daughter with unilateral microtia and atresia, we live in Vancouver, Canada. She recently got her first BAHA. The company is Cochlear. I thought I saw something somewhere about someone who makes custom (and really cute!) softbands that can be used with the BAHA. Does anyone have info and/or recommendations for a softband option other than ordering directly from Cochlear? Thanks in advance for any info you might have for me.Microtia G. replied:Hi Sarah and welcome to our support group! Yes, there are some moms who enjoy making custom head bands for BAHAs. You can visit our foundation's website, www.EarCommunity.com and go to the Helpful Resources menu tab and look for Microtia and Atresia Accessories. There you will find all kinds of helpful items, including info on how to order custom head bands. Thanks! Melissa, Founder of Ear Community and of our support group here on FBHeidi J. replied:Sarah there are LOTS of resources out there, and tons of fun things you can do to 'bling your BAHA' - at the Ear Community picnic we saw all sorts of different things parents had done with their daughter's Baha's. There is also a facebook group you could join if you are interested, it's called Baha "Kids Club" World Hearing, it's all parents of children with Baha's. It's a great group and there is tons of info and support as well as some of those mom's who make cute little headbands!
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Referral from
September 13, 2013
عهود Ø. asked:Helo, Who's the best dr. in microtia's surgery ? Help me pls, Thanks.Mary H. replied:مرØبا عهود: If you mean Reconstruction of the outer ear, there are many Drs in the US, they are specialized in one ( sometimes both) of these techniques : Medpor or Rib graft. 1- rib graft : As gabriela said, Dr Brent was considered among the Top of the top, but he is now retired. You can also check Dr Arturo Bonilla, Dr Charles Thorne, .... 2- Medpor : Dr Sheryl Lewin, Dr Reinish, Dr Thomas Romo... In the UK, there is : Dr. Neil Bulstrode, Dr David Gault, Dr Walid Sabbagha (I think he is Syrian). There is also a great french Dr called, Dr Francoise Firmin. Most importantly, before you decide for any technique or Dr, please do your research, because once a decision is taken, it will be irreversible, not to mention the high financial cost incurred. Be sure to use a highly experienced Surgeon, check their website, and their work (before and after), get in contact with them and ask all your questions, it will be also highly beneficial if you communicate with other FB members )(like Gabriela) who have already been there and are willing to share. For info on surgery techniques and a global list of surgeons, and a lot of other useful info, you can check www.earcommunity.com (This is the link for surgeons http://earcommunity.com/microtiaatresia/surgical-options/global-list-of-surgeons/). اتمنى لك Øظا موÙقا. هل انت من الاردن؟ انا من لبنان.
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Referral from
July 21, 2013
Asha S. asked:Hello guys, my name is Asha Sellier-Madeira, from Trinidad and Tobago West Indies. My sweet baby Thalia is 2 1/2 yrs old and has Microtia. I have limited access to information and don't know where to begin. Doctors in my country have not been able to direct me and I'm getting frustrated since I would like to help my child. Can someone help to direct me since I'm from another country?Microtia G. replied:Hi Asha and welcome to our support group! Congrats on your sweet little baby Thalia. :-) Our support group is a part of a nonprofit organization called www.EarCommunity.com When you have a moment, please visit our website and you will discover everything and anything you will ever need to know about Microtia. Our website is also translatable in 47 different languages if another language other than English makes you feel more comfortable. I think your English is perfect though Asha. You will be amazed at what you find on Ear Community. I created Ear Community from my heart and because of my own daughter, Ally, who is 3.5 years old and has Microtia and Atresia of her right ear. So, please try not to worry and get too frustrated. It is important though that you do realize that only you can be the best advocate for Thalia.. You just keep looking out for her and trying to do your research and learn about your options. Please feel free to ask our group any questions and again, welcome! You and Thalia are not alone! You have all of us now! :-) x - Melissa, Founder of Ear Community and our support groupHeidi J. replied:Welcome to the group Asha! I second everything Melissa said, last year we discovered Ear Community and the Microtia family here on Facebook, it's absolutely changed our lives for the better - we are SO grateful and have learned so much from the website, there is so much information you can learn to best advocate for Thalia! Again, welcome we are so glad to have you!
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Referral from
March 1, 2013
Trase S. asked:Are there some platic surgeons in Pretoria South Africa doing this operation?Microtia G. replied:Hi Trase! I have a list of global surgeons listed on my website, www.EarCommunity.com However, to my knowledge I do not know of any plastic surgeons who specialize in Microtia/Atresia repair in SA. Please realize that I of course do not know of each and every single surgeon who does Microtia/Atresia...only the main specialists that I have managed to find on line in my own research. I will tell you though, that one our group members, Aneesa Moola lives in Johannesburg and she recently had surgery with Dr. Francois Firmin in France. I would be happy to help you connect with her. Thanks. MelissaHeidi J. replied:Trase, I wish you the best of luck in finding a surgeon, and yes, you will find a long and wonderfully thorough list of surgeons on Ear Community, as well as a wealth of other knowledge! Good luck, let us know how your search goes =0)
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Referral from
January 24, 2013
Rita E. asked:I just found you by accident. I have a 3yr. old daughter Annaliesa who has this condition and she just started preschool. I'm having concerns with her speech but the school district whats to tell me that it's just an age thing after all "she's 3". And as much as I try not to compare my kids I can't help but do it when it comes to speech the thing is I have 3 yr old twins one boy one girl and well my son Carter seems to say his word a lot better than my daughter...she says cool for pool and dirtday for birthday and well if anyone has had to fight a school to help thier child get some speech therapy please I can use any suggestions as to how to get my concerns across without sounding too much like a "B**&*" I live in the Coal City area of Illinois. thank you.Microtia G. replied:Hi Rita! I am so happy that you found all of us by accident! I highly suggest you visit my website I created as well, www.EarCommunity.com First, Annaliesa is not alone. My daughter, Ally, who is also 3 years old and has RMA has a 1.5 year speech delay. For the longest time she didn't speak and when she did (up to the last 6 months), it was all single and double words where she should have been speaking using 4 and 5 words and speaking in phrases/sentences. We did have speech therapy for her through Early Intervention services, here in Colorado. My Ally is now in preschool and has IEP program to help her with her hearing loss and speech delay. She is aided with a bone conduction processor (both the Cochlear BP100 and the Oticon Ponto Pro) along with the FM system so the teacher's voice can be directly in her ear helping her to annunciate better. Jus tso you know...Ally does say a lot of T sounds when she shouldn't and doesn't pronounce her F's all of the time which is typical of a child who is hoh (hard of hearing). For example, instead of always saying 'Hailey' for her big sister, she often says 'Haity' and for Fishy, it is often ishy. Our speech therapist and her deaf/hoh teachers in preschool said this is all common and between the ages of 3 and 4 years they will get on with life with no problem. Please visit the menu tab "Helpful Resources" and click on the sub link "Education help and Info." Here you will learn all about IEP and 504 plans along with tips for your IEP meeting. We had Ally's IEP meeting in August (she is a September baby), and I invited Ally's audiologist, her speech therapist, our early intervention coordinator, and a guide by your side mentor from Hands & Voices to sit in on a unilateral hearing loss IEP (she usually deals with only deaf). I also invited Ally's pediatrican, but she could not attend. Be prepared (read the tips I have in this section of my Ear Community website), what to bring, how to act. For example, you will want to have a letter from a speech therapist who is used to working with your child to explain Annaliesa's situation from a medical professional along with her latest audiogram (you can view Ally's audiograms as well on the EC website), and be able to nicely fight for your child. You are her best advocate she has. I brought in articles for unilateral hearing loss and how speech is affected (you can find these articles on my website...print them off and take them in with you to the IEP meeting), and you should be familiar with IDEA...I have the link on my site for this as well as this is the law and this is what Annaleisa is entitled to through the law. Now, every state (and the city/county) within it is different and so is the budget/funding for that state as well. Also, if one school says they can not accept your child under an IEP because they are full, they shoudl direct you to another school that may be able to accept your child down the road. Also, if the school says they have no funding for an FM system, this is not necessarily true when FM systems can be provided through the school district for free through loaner banks. So, visit Ear Community and do your research. You will find an entire document I have put together as well under the Hearing Loss menu tab that shows the speech chart and based on Annaleisa's hearing loss...which sounds she may not be hearing well in order to annnciate them correctly, currently. You will also find that depending on which ear has the hearing loss, affects speech more than the other. I hope this helps you...I have attended trainings for IEPs and 504 plans so, let me know if I can help you more. Thanks! MelissaMarie L. replied:I just looked, it is a .com site www.EarCommunity.com - check it out, Melissa does a wonderful job.Heidi J. replied:Hi Rita! I'm so glad you found us by accident! I've been off the radar for a few days, but I'm so glad you've joined the group and that Melissa was able to give you tons of information - all of it true and very pertinent, I couldn't have said any of it better myself. I would trust your instincts as a mother, you know your child better than ANYONE and with the tools at Ear Community, you can start to advocate more fully for your child. I wish you the very best of luck, please let us know how it goes!! Thanks, Heidi & Rosalee (9 months old with LMA, Left Microtia and Atresia)
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Referral from
January 20, 2016
Melissa S. asked:Hi everyone! I am looking for a support group in the Chicagoland area. I have a nephew you was born a few days ago and has stage 3 microcia ( at least from what I have compared it to from pics) I want to help and support my brother through this journey and would like any guidance, recommendations, specialists, etc to help and guide my brother who is still in shock and a young father. I want the best for my nephew and to help him live a normal life. Baby was also born with a cleft pallet, and I have done some research and a good percent of babies with cleft lip or pallet also develop Microtia... Anyone else has experience this ? Any guidance will be appreciated! Thank you !Microtia G. replied:Hi Melissa! We are it! Our support group helps everyone. Microtia and Atresia is rare so there will not be a support group for each state. Our Ear Community Organization hosts family picnics that are FREE around our nation. Check back with us after February for the list of events that we will be hosting this summer. Hundreds of people attend our Ear Community picnics and you will be able to learn everything there is to know about Microtia and Atresia. Welcome to our support group. Please also pass our organization's website along to your brother and family as it will help them greatly! www.EarCommunity.com Thanks. Melissa T. (Founder)
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Referral from
June 29, 2015
Jeff L. asked:Hello Melissa, I just wanna know is there any summer picnic in Calgary Canada like that time of 5 years ago so that we can share some information about surgery. Thanks!Microtia G. replied:Hi Jeff! Sadly, we weren't able to do an Ear Community picnic in Canada this year, the closest ones to Canada this year that are still left are the one in Broomfield, CO on July 25 th and Seattle Washington on August 8 th. You can always send a private message if you have any specific questions, or check out www.EarCommunity.com where there is a lot of surgery information as well. I hope this helps =0) ~Heidi, admin and member of Ear Community's Board of DirectorsMicrotia G. replied:Hi Jeff! I am hoping to plan two picnics in Canada for next year. It just depends on funds. We should know by the end of this year/January of next year. Thanks! Melissa (Founder of Ear Community).
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Referral from
May 12, 2015
Mohammad I. asked:Hi Can any one give me details update about Dr. Lim lynn of singapore pl. I will b highly benifited.Microtia G. replied:Hello Mohammad, this is what I have for Dr. Lim Lynn: Singapore Dr. Lynne Lim National University Hospital ENT Clinic Location Kent Ridge Wing 2, Level 3 Ph: 65 6772 4486 E-mail: ent@nuhs.edu.sg http://www.nuh.com.sg/about-us.html Thanks and I hope this helps you! This information can be found on our Ear Community website at the following link: http://earcommunity.com/.../surg.../global-list-of-surgeons/ Melissa (Founder of Ear Community and our support group)Microtia G. replied:Hi Mohammad, I went ahead and reposted your question on Ear Community's wall.
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Referral from
November 5, 2014
April Y. asked:Hey guys! I'm looking for information from someone who has had ear reconstruction done with Dr. Lewin in California. We are in the early beginning stages of our journey. My daughter will be 3 in Feb and has BMA.. I have question about travel and areas to stay in while we are there. I have tried to do some research online on the surrounding areas but Its very overwhelming!Microtia G. replied:Also, have you had a chance to check out our website! www.earcommunity.com it has a lot of info on travel and places to stay. ~Shannon
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Referral from
August 5, 2014
Gina G. asked:Hi, Is there anyone here in the Dallas / Ft. Worth area? I have a 6 month old son with unilateral microtia/atresia, and I would love to connect with any parents of microtia kiddos in the area! Thanks!Microtia G. replied:Hi Gina! Oh how I miss Texas! I grew up in Lewisville/ Highland Village, small world =0) I know that there is a mom in our group by the name of Melea Keck who lives in Texas but I'm not sure exactly where, feel free to look her up, she has a daughter with unilateral microtia/atresia and is just a sweet, wonderful person! You can also check the forum on www.EarCommunity.com where people from different areas are connecting. Good luck! ~Heidi, admin and member of Ear Community's Board of Directors
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Referral from
November 11, 2013
Melissa S. asked:Hi guys, there might be a better spot to post this question (like in the forum) but i'm sure. Was wondering if anyone in the Indiana area could recommend a doctor for medpor surgery. Looking for someone in Indiana. Thanks so much!Microtia G. replied:Hi Melissa! I'll get this question posted to the group's main page, also, if you go to www.EarCommunity.com and click on the Microtia & Atresia tab, then click on Surgical Options, there is a link for a global list of surgeons. Pretty much the best of the best are on the list, I know there is only a handful that do excellent work in the states, I'm not sure about Indiana but hopefully there's a great option on that list for you. I hope this helps ~Heidi
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Referral from
November 1, 2013
Danielle O. asked:Does anyone know any plastic surgeons who work adults with microtia stage 3Microtia G. replied:Hi Danielle, please visit my website, www.EarCommunity.com and click on the Microtia and Atresia menu tab and scroll down and look for the link called List of Global Surgeons. Most plastic surgeons operate on adults in addition to children. Thanks. - Melissa, Founder
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Referral from
February 8, 2013
Xamara L. asked:Mellisa Can you please tell me the reconstructive craniofacial medical services that are in Canada, and the ones in Edmonton, i need to start consulting about what methods for microtia and atresia they employ to get Diego the best treatment. I was 2012 calgary microtia picnic host but i have misplaced the edmonton reconstruction info i had. thanks so much in advanceMicrotia G. replied:Hi Xamara! Yes, how could I ever forget you my friend for hosting this last summer's Calgary Microtia picnic. I have you and your family listed on my donor page of the Ear Community website by the way. Thank you for all of the goodies you got for those lucky kiddos at that picnic and for all you do Xamara. Go to my website, www.EarCommunity.com and click on the Microtia and Atresia menu tab and look for the sub link List of Global Surgeons. You will find all of the surgeons that I know who have chosen to specialize in Microtia surgery. Dr. Leila Kasrai is Ontario and Dr. Gordon Wilkes Edmonton are among the best. Canadian surgeons only believe in the Rib Graft surgical technique so you won't find any Medpor surgeons in Canada just yet. However, many families from Canada do fund raise and come to the US for more options. I don't know if it is possible, but my Los Angeles picnic will be expecting 400 people and it is in collaboration with a surgical conference hosted by Dr. Sheryl Lewin (Medpor) and her Earicles - Miracles for Ears foundation. The LAMAC Conference is also expecting Dr. Arturo Bonilla (Rib Graft) and Dr. Brad Kesser (Neurotology/Canalplasty surgeon) as speakers. I will also be speaking at this conference. Maybe you can make a little road trip. I know Diego requires a lot of care, but I thought I would just mention it. :-) Don't worry, you are a wonderful mommy and an amazing advocate for Diego. Whatever decision you make will be the right one for you/Diego. Take care my friend and do your research. Ask to see lots of before and after pictures and utilize my website, www.EarCommunity.com to help you with before and after pictures. It is also translatable in 47 different languages if this helps you for an easier read than English, but I think your English is very good Xamara. Check out the EVENTs menu tab if you haven't too and see the pics from your picnic! Melissa :-)
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Referral from
February 4, 2013
Deena S. asked:Any advice on obtaining a BAHA? My baby girl has RMA and our ENT advised us that a BAHA would be beneficial. Should the state pay for this? She is already enrolled in the Early Steps program. Has anyone's insurance company covered it? We have UnitedHealthcare. Just wondering how to best approach this. Thanks for any suggestions!!Microtia G. replied:H Deena, some insurances cover the cost of a Baha, but many will deny your claim. We also have UHC and our is 80/20...so, our out of pocket (estimated) would be about $1,700.00 You can find a ton of information on my website I created called www.EarCommunity.com under the Hearing Loss menu tab. Just click on the main Hearing Loss tab and a ton of sub links will come up...look for the insurance and cost links. Also, Early Intervention programs in 'some' states will actually pay in full for a Baha, but not all states do this as they do not have the funding. If you find that you are turned away from coverage and cannot afford one you can apply through Ear Community for help under the donate menu tab, but my goal is to help families who are needy or who have absolutely tried to get a Baha and have repeatedly been turned away from their insurance provider. Also, you will find all of the Baha codes that should be used when contacting your insurance provider. You should always let your audiology office do the talking for you with your insurance provider as they do this all of the time and know how to reword what it is that they are trying to say to your benefit. I hope this helps you. Thanks. Melissa - Founder of Ear Community and our support group here on Facebook
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Referral from
December 9, 2012
Megan S. asked:My name is Megan and my son tucker was born with RMA. He is now 7months old and thus far it seems like everyone we have seen has the sit and wait approach to his hearing. His latest evaluation by early intervention has placed him behind developmentally in most every category. I am just trying to find local programs to join that will help us, help him, get back on the same track as every other flourishing 7month old. Is there anyone out there that has recommendations for programs and/or classes near Joliet, IL? We are currently looking around at programs offered by the park district, library, and school district. I know we will be taking things like mommy and me classes so we can get him to interact with other children his age, but I don't know if that is enough. Any suggestions would be greatly appreciated!Microtia G. replied:Hi Megan, as Tena mentions above, get a hold of your early intervention services office. They are called something different in each and every city/state/county, but a deaf and hard of hearing school should be able to guide you in the right direction. You can also visit www.EarCommunity.com for more information regarding helpful resources. My daughter is 3 and has RMA and we had therapy services for her through EI. She is now on a school IEP in preschool and wears the FM system with her sound processor/Baha as she is currently speech and communication delayed, but is speaking better and more each day. You will be fine and so will Tucker! Welcome! Melissa and Ally (RMA/3 years old)
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Referral from
October 25, 2012
Paula M. asked:My son is scheduled for surgery in November 15th with Dr. Reinisch and we are looking for nearby accommodations - a small kitchen area would be great . Any suggestions are most welcome.Microtia G. replied:Hi Paula, in addition tot he feedback you may receive from members of our group responding to your question/post, please go to www.EarCommunity.com and go to the Microtia and Atresia menu tab. Look for the sub link under this section related to places on where to stay when traveling for surgery and helpful tips when planning for surgery. Ear Community has so much information that will help you. Good luck with surgery. Dr. Reinisch is amazing! melissa
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Referral from
October 5, 2012
Cam K. asked:Needing feedback on the insurance process after CAM surgery. Has anyone gone through this process and wouldn't mind sharing your experience? We were very blessed with the CAM surgery and we couldn't be happier with our decision for our son, but we would greatly appreciate any assistance or advise with the insurance process. Thank YouMicrotia G. replied:Hi Cam, I have some information about insurance on our Ear Community website (www.EarCommunity.com). I can also help put you in touch with some families who have had the CAM procedure done. The main problem is trying to get the insurance provider to understand what the surgery is and why it is necessary and how the patient can benefit along with saving the insurance company money since CAM allows for two procedures to be performed in one, saving the insurance company money regarding less surgical procedures needed and less time required in the OR as additional expenses. There is no set ICD code for CAM...this is what causes issues most of the time. However, as long as the surgeon's office is good at explaining what it is that is going on, they can usually get it taken care of and accepted by the insurance provider. You can also appeal. Many families have appealed and have been successful. Melissa
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Referral from
August 9, 2012
Jamie P. asked:Hi all! I was just trying to figure out where I can go to see where people are from. I live in Portland Oregon and wanted to know if there were others from this area.Microtia G. replied:Hi Jamie! There are two places you can go to find where others are near you. The first place is on www.EarCommunity.com register a user name and a password and then you will see a FORUM and look for "Helping Connect Microtia and Atresia Families"...see if anyone else has posted from Oregon. Also, on our page here you can go to our discussion FORUM and look for the discussion topic: "Where are you from?" Thanks. Melissa
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Referral from
May 10, 2012
Shawnie W. asked:Anyone know of a good surgeon in Mesa/Phoenix Arizona?Microtia G. replied:Hi Shawnie, I currently do not have any information for any reputable surgeons in your area. Not every state has a specialist for Microtia or Atresia and so many families end up driving a few states over or traveling to NY or CA. Please take a look at our list of global surgeons on www.EarCommunity.com It can be found under the Microtia/Atresia menu tab and then look for the surgical section. Thanks and good luck to you and your family. Please feel free to ask us any questions. MelissaMicrotia G. replied:If you are looking for an ENT, you may want to check our FORUM on Ear Community too...I have a list of helpful ENTs. Melissa
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Referral from
April 30, 2012
Andrea S. asked:We had planned to have my 2.5 year old sons medpor surgery in 2013. But after consulting with Dr. Lewin she said he has to much of an ear for the medpor to be used. She suggested soft tissue reconstruction ( I believe that is the correct name). Has anyone had this done? Were you happy with the results? I'm starting to wonder if maybe we should leave it until he is older and let him decide... I'm just worried that it may be a problem when he's in school. He was also born with ptosis of the rt eye and just had his second surgery to correct that. Any suggestions on a surgeon that does this procedure?Microtia G. replied:Hi Andrea! Yes, we have had some members have soft tissue ear reconstruction on their children for the very same reason Dr. Lewin has explained to you. You can learn more about soft tissue along with insurance and cost info on www.EarCommunity.com Also, you may want to contact Melinda Brady at her own website: http://onelittleear.blogspot.com/ or via her FB account at: http://facebook.com/melinda.l.bradyMicrotia G. replied:Melinda's daughter Shae had soft tissue reconstruction performed on her ear. Dr. Eavey is one of the best surgeons who specializes in this. Dr. Eavey's info can be found on Ear Community on the global surgeon list. Hope this helps! Melissa
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Referral from
February 18, 2012
Angela G. asked:My daughter is 2 1/2 and has hemifacial microsomia. I was wondering if anyone has input on the order of surgery for jaw/ear reconstruction. Is there a preference for which one comes first? ThanksMicrotia G. replied:Hi Angela, please visit www.EarCommunity.com for this information. You will find a Hemifacial Microsomia tab under the main Microtia/Atresia Menu tab and jaw distraction is discussed there. We also have some members who have gone through this with their children...maybe they will see your post. Thanks. Melissa
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Referral from
February 5, 2012
Rebekah G. asked:Hi just found your page tonight... I feel so in the dark about this. I had a wonderful doctor in South Carolina but since then we have lived in Brasil and we have finally settled in Ohio. I don't have any good recommendations. Is there anyone who could point me to a good ENT who deals with microtia?Microtia G. replied:Dr. William Landis is at the university in Akron, OH. :-) Please also see our global list of surgeons under our FORUM. The best place to find information now is on the new website I just launched www.EarCommunity.com It has more than you could ever imagine on it. Thanks. Melissa and Ally (RMA/age 2.5 years old)
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Referral from
January 16, 2012
Halima D. asked:hi, does anyone know of any support groups in the maryland area?Microtia G. replied:No problem MaryKay. I am so excited to hear that the EAA spotlighted our support group today! :-) I'll be launching our new website at the end of this month and it will be www.earcommunity.com I heard back from the AudiologyOnline today and they will be listing our support group and the new website as helpful resource. Thanks. Melissa
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Referral from
November 10, 2013
Microtia G. asked:Melinda asks: "Does anyone know of any videos out there preparing kids for surgery. My son is getting three implants soon for a baha and prosthetic and is very scared..advice?" ~HeidiMarie L. replied:Check Melissa's web site - www.earcommunity.com
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Referral from
September 27, 2013
Ema D. asked:Hello, everyone! We're from Lithuania and can not find any specialized surgeons around us for neither atresia nor microtia repair. Could anyone recommend someone somewhere within the EU? I imagine Germany, Berlin would be the closest highest level medical center. Many thanks :) p.s. My baby girl will celebrate her first birthday next weekHeidi J. replied:Ema, congratulations on your baby girl's first birthday coming up! That is SO exciting!! www.EarCommunity.com has a whole list of surgeons around the globe that do reconstructions. From what I understand, Melissa, our groups founder has kind of screened these surgeons a little just so we can be assured that they are good at what they do - that's not to say, don't do your homework because looking at pictures of what surgeons do is ultimately going to be your best bet in choosing the best fit for you and your family, but I would suggest starting there, if you go to the Ear Community website, and go to the top drop down tab that says 'Microtia and Atresia' then select Surgical options and there will be a link to choose Global list of Surgeons. Good luck!
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Referral from
May 21, 2013
Shannon D. asked:Are there any activities going on in Billings, Montana? My granddaughter has Microtia, and I'd love to find folks in our area who can relate. If there are no events, how would I go about getting one going in our area?Heidi J. replied:Shannon, I don't believe there are any activities in Billings, although I really haven't looked into that area. We are in the Boise, ID area (so not TOO terribly far from Billings lol) Have you looked in the forums on www.EarCommunity.com? Sometimes families will try to connect with each other on those when they find people close to where they live. I know that Melissa tries to make the picnics as accessible as possible but I also would imagine that it would be impossible to do one in every state! That being said, I do think they will just continue to move and expand, so maybe there will be an EC picnic closer to Billings someday!
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Referral from
January 13, 2013
Susan C. asked:We are very close to making our decision to have reconstructive surgery by Dr. Griffiths. Has anyone had his one-step surgery?Heidi J. replied:Susan that's very exciting and a big step! We met with Dr. Griffiths this last summer and really liked him! Our daughter (Rosalee, LMA, 9 months old) isn't quite old enough for the surgery but I do think that it's something we'd like to look into more as she gets older. Have you tried asking this question on the forums in www.EarCommunity.com also? I know if you check under the Forum tab, and then in the Microtia & Atresia group there is a group talking about doctors - that might be another resource for you if you don't get many people posting on here - but I hope that anyone who has had that experience can share with you! If you do go through with it, please feel free to share your experiences so we can all learn how it went! Thanks, Heidi =0)
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Referral from
January 10, 2013
Katie W. asked:I'd love to connect with someone who has had surgery performed by Dr. Reinisch.Heidi J. replied:Katie, while I don't have any personal experience to share, if you check out www.EarCommunity.com if you go under the 'Forum' tab, and then under the Microtia & Atresia tab, there are some discussions about different surgeons. It's also another great resource if you want to find more people to talk to about Dr. Reinisch. I hope this helps - good luck!
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Referral from
November 21, 2012
Giselle W. asked:We are getting my 28 month old a little balance bike for Christmas. Any recommendations for bike helmets that accomadate a soft-band baha? She has RMA. Thanks!Heidi J. replied:Giselle, your little one will be so excited this Christmas! If you go to www.EarCommunity.com and click on the tab Helpful Resources, then Helpful Accessories, there is a link for Microtia and Atresia accessories. Click on that, scroll down a ways, there is info for eye glasses and such, before you come to a street sign that says 'Deaf Child' there is a little article about helmets made for kiddos that supposedly has room for sound processors - the link for the page is in the little article bit. I hope that helps!
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