Guest guest Posted March 20, 2003 Report Share Posted March 20, 2003 Hi all, I read the email dated Mar. 17, asking about doctors in Boston. Maybe I could recommend one. My surgeon is Dr. Mulliken at Children's Hospital-Boston. He's really really good; he is a craniofacial surgeon, and he does good ears, but works more on jaws and cleft palates. Hope this helps in some way, shape or form. By the way, I think I met you, Sigga (did I spell your name right?) in Dr. Mulliken's office in February. I distinctly remember looking at a little girl from Iceland who had something wrong with her jaw, a slightly malformed ear, and I did notice a skin tag. Was it your daughter? Anyway, I think I showed you my ear. Just thought I'd mention it b/c it seems like a coincidence. Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2003 Report Share Posted March 28, 2003 Hi Darlene, I live in Virginia - and we have a great ENT, Dr. Jahrsdoerfer who specializes in atresia. I would recommend driving up to UVA in Charlottesville, VA to meet him. It would probably be a four hour drive from Raleign. Lili ('s mom - 10 mos, bilateral microtia, atresia/stenosis) New member My name is Darlene. My son was born with Atresia Microtia on the left side. Jarrett is almost 3 months old now. We have had his hearing tested (Bone Conduction Test, I think that is the name of it.) and he has some hearing out of that ear. We have also seen a surgeon, he told us that Jarrett's ear canal did not form and that some bones are fused together. Also his ear drum did not fully develop. We go back to the surgeon when Jarrett is 4, then we will discuss reconstruction or a plastic ear. Is anyone familar with Dr. McElveen in Raliegh, NC ? All of this is so overwhelming sometimes, I don't know what kind of questions to ask or even how to comprehend all of this. I remember feeling like I did something wrong for this to happen to my child. I know now that I am lucky to have him no matter what, and that things could have been worse. I look forword to hearing from everyone and I hope to understand and learn alot.DarleneJarrett (left atresia microtia ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2003 Report Share Posted March 28, 2003 Hi , Welcome to the group. You have found a wealth of help and information here. I am a 41 year old adult with unilateral microtia/atresia. I have recently completed reconstruction (yes I had surgery done as an adult). My surgery had many ups and downs, I had reconstruction done first using the polyethelyne implant. The implant failed (became infected) and eventually we had to remove it and I went through reconstruction using my rib cartlige. This surgery has been a success. I understand completely how you feel about not expecting perfection but wanting something that is acceptable. I'm sure there will be many people on this list that can offer you all kinds of advice and support. They all were sure a lot of help for me. I do have a website so you can get an idea what all I have went through http://www.geocities.com/surfsup62/surgery.html (some of the pics were taken during surgery and are a bit graphic). If you have any questions feel free to ask... I'm sure we'll be able to answer them for you. Patton Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2003 Report Share Posted March 28, 2003 Hi Darlene! Welcome to the group. My name is a, and my son , was born with right Microtia/Atresia, and Hemifacial-Microsomia. He is now 5 1/2 months. You have come to the best place for answers to your question. I just had 's hearing tested about 2 weeks ago (known as ABR), and sadly he has no hearing on the right side. But as everyone says, at least he can hear from his left ear. We have not seen a surgeon as of yet, although a CT Scan was done when he was born, and he also has issues with his ear canal, etc. Every single parent in this group can easily understand how overwhelming this is. I for one was a complete emotional mess. I cried every single day the first two months. Finally when was 3 month's old, I found the courage to do the research on the Internet, and I found this life saving group. I only wish I would have found this group the day I got home from the hospital. It would have made my life easier from the beginning and saved me a lot of grief and tears. Coming to terms with 's condition was extremely hard for me, and I will never forget the day I finally realized it. I was sitting on my bed one morning, and I thought to myself, " It's a good thing that is my son, because only I can do the best research and find the best Dr's to help him, and no one will do a better job for him than me " . Trust me on this one, things will get easier as the weeks go by, and staying in contact with this group is even more helpful. Ask any and all questions that may come to mind, no matter how insignificant they may seem. Don't ever think that you did something wrong, and that you caused this to happen to your child, because you didn't - it's simply due to our imperfection as human beings. Love and cherish Jarrett. He is an extremely lucky boy to have such a loving and caring mother. I also hear comments like " it could have been worse " and although I realize people say this with the best intentions, I always think, " Yeah, well it could have been better too " . My thought is, no matter how worse it is or not, I think that as parents we worry about our children regardless of the severity of their condition. I think it hurts just as much to have a little something wrong as having a lot wrong. We still go through the same agony, thoughts, and fears. I'll tell you about some of the things I have done so far for , and hopefully they will be of help, although it sounds like you are already heading in the best direction. I had a Kidney ultrasound done - I learned from this group that kidneys develop at the same time as ears. One Dr. told me 99% of the time the kidneys are just fine, but I figured it wouldn't hurt. 's kidneys are fine, but I will continue getting them checked every so often, just to be safe. I also had an EKG on his heart, based on suggestions from this group, and that also came out fine. He has been to an Audiologist, and will continue to have his hearing tested once a year. Lastly, check out earsurgery.com. It's a web site by Dr. Brent, who does ear reconstructions here in California. a Mother of , 5 1/2 months, Right Microtia/Atresia, HFM On Wed, 26 Mar 2003 03:05:07 -0000 " smackdragon200201 " smackdragon2002@...> writes: > My name is Darlene. My son was born with Atresia Microtia on the left > > side. Jarrett is almost 3 months old now. We have had his hearing > tested (Bone Conduction Test, I think that is the name of it.) and > he > has some hearing out of that ear. We have also seen a surgeon, he > told us that Jarrett's ear canal did not form and that some bones > are > fused together. Also his ear drum did not fully develop. We go back > > to the surgeon when Jarrett is 4, then we will discuss > reconstruction > or a plastic ear. Is anyone familar with Dr. McElveen in Raliegh, > NC ? All of this is so overwhelming sometimes, I don't know what > kind > of questions to ask or even how to comprehend all of this. I > remember > feeling like I did something wrong for this to happen to my child. I > > know now that I am lucky to have him no matter what, and that things > > could have been worse. I look forword to hearing from everyone and I > > hope to understand and learn alot. > > Darlene > Jarrett (left atresia microtia ) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2003 Report Share Posted March 28, 2003 Hi and welcome to the group! I have a son Josh who is 10, and recently had his ear reconstructed about a year ago by Dr. Brent. We too are from Michigan (Lake Orion), where are you in Michigan? This group is fantastic! You are among friends and are always just a click away from support! There are a couple of surgeons I know of for microtia repair. One is in Marquette, but I can't remember her name (I'll get it for you) and the other is in Southfield (Dr. Ian ). Perhaps they may be able to help you on a local level. , I can't begin to put myself in your shoes because I don't have microtia. However, there are many on this list who do have microtia who may be able to better relate to your situation. I do know what it's like to be raising a child with microtia, and there are a few points that I have shared with Josh and would like to share with you as well: You are wonderfully made exactly the way you are. Your ears do not make you a person, and a lack of an ear does not make you any less of a person. When Josh was born, I wasted a lot of time being apprehensive with and fearful of his microtia. Little did I know that in the face of this adversity-and any adversity for that matter-stood a mountain of strength waiting to be discovered. Strength to handle the unknown, and strength to handle the truth. Strength to stand firm and strength to stand proud. Do not be defeated by your circumstances, but rather use them to build a stronger and better you! You are wonderfully made and made to be you! I too have suffered from a low self-esteem, and I know how defeating that can feel. But now I look at my circumstances and think, " Why am I trying so hard to fit in or be like everyone else, when God has plans for me to stand out! " Lastly, this excerpt from Mandela is in our home and applies to anyone trying to achieve a healthier inner peace. Mandela - 1994 Inaugural Speech Our deepest fear is not that we are inadequate, Our deepest fear is that we are powerful beyond measure. It is our light, not our darkness, that most frightens us. We ask ourselves, who am I to be brilliant, gorgeous, talented and fabulous? Actually, who are you not to be? You are a child of God. Your playing small doesn't serve the world. There's nothing enlightened about shrinking so that other people won't feel insecure around you. We were born to make manifest the glory of God that is within us. It's not just in some of us; it's in everyone. And as we let our own light shine, we unconsciously give other people permission to do the same. As we are liberated from our own fear, our presence automatically liberates others. Let your light shine ! God bless you! Peace - beth >From: DadaApeluwa@... >Reply-To: AtresiaMicrotia >To: AtresiaMicrotia >Subject: New Member >Date: Fri, 28 Mar 2003 09:19:48 -0500 > >Hello, > >My name is . I am 25 years old. And I have Microtia on my right ear. >I came across this group, after searching and searching for help. > >A little history about myself: I was born in an African country. I came to >the US (Michigan) when I was 19. I have since graduated from college with a >bachelor’s degree, and currently pursuing an MBA degree. > >I had a surgery performed on the ear when I was 21 (in the US), but the >surgery was unsuccessful. Not only has this compounded my sorrow and >anguish, it also consolidated my despair about this ordeal. I am suffering >from an on-going acute low self-esteem. > >I have contacted some surgeons, by mail and in person, and they expressed >worries about the scared tissue. Some said they could improve, >considerably, on the ear. I try to shy away from accepting prosthesis, >because I am not comfortable with its disadvantages – suffices to >say that I am not looking for a perfect ear (just something not too >conspicuous). > >I consider myself helpless right now. I need help from anyone. I need >advice. Please help! > >Regards >D _________________________________________________________________ Tired of spam? Get advanced junk mail protection with MSN 8. http://join.msn.com/?page=features/junkmail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2003 Report Share Posted March 28, 2003 Hi , Thank you so much. I'm very pleased with what my surgeon has done. Dr.Eppley is also in this group too. He did mention once that he was really pleased with what we could accomplish after the implant had compromised tissue due to the infection. I am going to be undergoing one more surgery to release my ear lobe (the lower portion) which is still close to my head due to some scar tissue. But, we're waiting until later this Spring to do that surgery. I'm sure Dr.Eppley would be more then happy to answer any questions you may have too. I feel very lucky to have found him and I have never regretted a single decision I've made every step of the way. Patton Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2006 Report Share Posted January 9, 2006 Welcoome to our wonderful group, Pat! I did Atkins years and years ago and it wreaked havoc with my system. What kind of furry friends do you have? We have 4 indoor dogs. A chocolate Lab, CoCo; a yellow Lab, Jake; a completely black Shi Tzu, Cosby and his little brother, Nash. What a combination!! Donna Hello all! I did Atkins for a long time, lost 55 pds and went nuts over the holidays two years ago. I could never do Atkins again simply because I got so very sick from meats all the time. I just know this is going to work far better for me. Glad to find a support group as well. Those Atkins' groups were somewhat aggressive and condescending when I needed their support the most. With fibromyalgia, that diet worked because I have reactive hypoglycemia, but I never felt truly satisfied. Pain is a part of being alive, and we need to learn that. Pain does not last forever, nor is it necessarily unbeatable, and we need to be taught that. hugs, Pat aka Fibronurse Quote Link to comment Share on other sites More sharing options...
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