Guest guest Posted December 6, 2001 Report Share Posted December 6, 2001 me again..... i always see this address in Maplewood NJ, listed......does anyone know of it? Has anyone visited or contacted them? Perhaps someone knows Betty Olds? It would be rather difficult for me to phone from here (South Africa)...so how about someone living in or close to Maplewood phone them, and tell us all about it!? Jack and lynne are the two that I know of living close by, but lynne is not 'on line' at this moment in time! Jack - or anyone else - willing to get some infomation for us!? kelly Microtia/Ear Atresia Ear Anomalies Reconstructed: Atresia/Microtia Support Group People served: Individuals and families dealing with ear atresia or microtia Services provided: Support, information and referral, and conferences Address: 72 Durand Road, Maplewood NJ 07040 Phone number: Contact person: Betty Olds betsy and i are dear friends ever since she first contacted me with regard to her son Forest, now about 15 or so. her group is the loose association that i formulated to host drs brent and jahrsdoerfer when they visit here (hopefully springtime in nyc) , so i daresay that if u contact her, she will refer you to me.. betsy does my advance planning, reservation taking and helps out in 101 ways to get that program going because i am not too strong on details. if it werent for her, those meetings would not have chairs, food, clowns, or schedules for individual visits. shes a wonderful lady and i love her dearly and is a PERFECT example of the friendships formed when someone realizes that someone ELSE has walked this way before. betsey passes me the info of a new parent; i try to call them ASAP, and put them on my mailing list which i maintain. she also does a lot of support work with new parents. shes closely hooked up with NYU craniofacial and the offshoot forwardface. FORWARDFACE is at 317 east 34th street # 901A new york,ny 10016. they publish an excellent magazine with first person accounts of craniofacial anomalies and have a modest membership fee. their # is 212/684-5860. i cant presume to speak for another person, but i daresay thats the info betsy deals in...of course u can call her..she's a great lady. jack Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2001 Report Share Posted December 6, 2001 ! so basically it is YOUR support group, right? and Betsy basically 'runs' it for you?! another thing...what is the subscription fee of this magazine!? do you have any idea? thanks for the reply! yeah, unless she's holding out on me and starting a rival group! lol! i dunno the fee, but it cant be *that* much.. they might even subsidize the membership (ask 'em!) jack Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2001 Report Share Posted December 6, 2001 me again..... i always see this address in Maplewood NJ, listed......does anyone know of it? Has anyone visited or contacted them? Perhaps someone knows Betty Olds? It would be rather difficult for me to phone from here (South Africa)...so how about someone living in or close to Maplewood phone them, and tell us all about it!? Jack and lynne are the two that I know of living close by, but lynne is not 'on line' at this moment in time! Jack - or anyone else - willing to get some infomation for us!? kelly Microtia/Ear Atresia Ear Anomalies Reconstructed: Atresia/Microtia Support Group People served: Individuals and families dealing with ear atresia or microtia Services provided: Support, information and referral, and conferences Address: 72 Durand Road, Maplewood NJ 07040 Phone number: Contact person: Betty Olds Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2001 Report Share Posted December 6, 2001 thanks jack! so basically it is YOUR support group, right? and Betsy basically 'runs' it for you?! another thing...what is the subscription fee of this magazine!? do you have any idea? thanks for the reply! Microtia/Ear Atresia Ear Anomalies Reconstructed: Atresia/Microtia Support Group People served: Individuals and families dealing with ear atresia or microtia Services provided: Support, information and referral, and conferences Address: 72 Durand Road, Maplewood NJ 07040 Phone number: Contact person: Betty Olds betsy and i are dear friends ever since she first contacted me with regard to her son Forest, now about 15 or so. her group is the loose association that i formulated to host drs brent and jahrsdoerfer when they visit here (hopefully springtime in nyc) , so i daresay that if u contact her, she will refer you to me.. betsy does my advance planning, reservation taking and helps out in 101 ways to get that program going because i am not too strong on details. if it werent for her, those meetings would not have chairs, food, clowns, or schedules for individual visits. shes a wonderful lady and i love her dearly and is a PERFECT example of the friendships formed when someone realizes that someone ELSE has walked this way before. betsey passes me the info of a new parent; i try to call them ASAP, and put them on my mailing list which i maintain. she also does a lot of support work with new parents. shes closely hooked up with NYU craniofacial and the offshoot forwardface. FORWARDFACE is at 317 east 34th street # 901A new york,ny 10016. they publish an excellent magazine with first person accounts of craniofacial anomalies and have a modest membership fee. their # is 212/684-5860. i cant presume to speak for another person, but i daresay thats the info betsy deals in...of course u can call her..she's a great lady. jack Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2002 Report Share Posted March 26, 2002 tracy welcome aboard.. you might want to start with some basic information from dr brent, a pioneer in this surgery.. his website is www.earsurgery.com jack Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2002 Report Share Posted March 26, 2002 Welcome , You will get lots of great information from this group and support. and have just been to L.A. Children's Hospital for their 3 yr old sons surgery with Dr. Reinisch (hope I got all the names right). They would be the ones to answer your questions on that option. There are lots of others here with a wealth of information. Autumn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2002 Report Share Posted March 26, 2002 Two places in LA we've been to with great results (for overall hearing/genetic evaluations when your son is slightly older) UCLA Med Centre -- Dr. Akira Ishyama is the head ENT there. Extremely knowledgeable and very up-to-date on all the latest techniques and who is doing what kind of surgery and where. House Ear Institute -- the Dr. we saw there was Rick Friedman, it is one of the top hearing centres in the country. And of course, being in California, you are never more than a single Southwest airline ticket away from Dr. Brent . . . I live about 35 miles south of SF, let me know if I can be of any assistance, and welcome to the list ! Sheri microtia I have a son hes 6 months old born with microtia. Just want to be able to talk with others who are dealing with this. We are leaning more towards the surgery at 3 years of age using the synthetic material. Has any one heard good things about this or have had this done? I have lots of questions. We have been tlaking with people at the hope for kids foundation in L.A. Calif.. Thanks again any replies would be great. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2002 Report Share Posted March 26, 2002 Hi , Welcome to a great place! I am Patton, a 40 year old with microtia/atresia. I recently have undergone reconstructive surgery using the Medpor polyethelyne implant. I'm sure you will find lots of helpful information here. This is a great group or people and I don't think I could've gotten through all of this without their support. If you want to see photos of my surgery (some are a bit graphic) go to www.geocities.com/surfsup62/surgery.html Once again welcome..and I hope I can be of help too. P. -- microtia I have a son hes 6 months old born with microtia. Just want to be able to talk with others who aredealing with this. We are leaning more towards thesurgery at 3 years of age using the syntheticmaterial. Has any one heard good things about this orhave had this done? I have lots of questions. Wehave been tlaking with people at the hope for kidsfoundation in L.A. Calif.. Thanks again any replieswould be great. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2002 Report Share Posted March 26, 2002 Actually, I think was looking into the Polyethelene implant.... You can check out Dr. Romo's site at http://www.earreconstruction.com/ Dr. Brent is very good at the Rib Graft method. There are members on this list who have experience with both the Rib Graft method, and the implant method.... So ask your questions... Steve tracy welcome aboard.. you might want to start with some basic information from dr brent, a pioneer in this surgery.. his website is www.earsurgery.com jack Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2003 Report Share Posted February 21, 2003 I am so glad I found this group. My son Mike had 10 surgeries, each lasting approx. 10 hours. We first started in Germany back when he was just 7 years old. We went to the "so called" best doctor for this kind of surgery. He opened the ear canal and rebuild the bones. He also started on the outside", with skin crafts and cartilage. Well, in 1990 we came to the States and found another doctor who said he can fix it, again with skin craft and cartilage. Poor Mike underwent another 3 surgeries and the outcome was devastating. Mike refused to have any more surgeries done. Now at age 20 he wants his ear fixed. He has suffered from depression and has low selectee. Please, is there anybody who had a successful surgery after going through more than the normal procedure? Birgitte ____________________________________________________ IncrediMail - Email has finally evolved - Click Here Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2003 Report Share Posted February 21, 2003 Hi Birgitte, Welcome to the group. I am 41 years old and have just finished reconstruction. I have unilateral(rightside) microtia/atresia. I underwent reconstructive surgery using the polyethelyne implant first. Well to make a long story short that failed and I then underwent surgery again using rib cartilige. This has proven to be a success. In total I have underwent probably 6 or more surgeries. My surgeries all started after the age of 39 years old!! So..it's never too late to get reconstruction. I'm sure you will get alot of helpful information from the members of this group. We even have two respected doctors also on the list that can offer you alot of helpful advice too. Tell your son not to give up, I for one am proof that you are never too old to have reconstruction!! Patton Quote Link to comment Share on other sites More sharing options...
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