Liza Orlovskaya is a beautiful and bright 12 year old from Russia who was born with bilateral Microtia and Atresia. She does well in school and loves spending time with her friends, but it was becoming increasingly difficult for her to communicate. Due to a lack of awareness and information, the Russian government did not provide medical insurance for those diagnosed with Microtia and Atresia. But, Liza’s mother, Aleksandra, worked tirelessly to help Liza through speech therapy as she grew up and is always there to provide support through difficult times. She also worked to reach out to groups who could help.
Not only would Liza not receive medical insurance, but teachers and doctors did not understand her condition. Many doctors told her mother that there was little hope that Liza would be able to speak or live a normal life. The public perception and confusion around Liza’s condition was so severe that doctors told Aleksandra to leave Liza when she was born.
Although there were limited resources and information to provide support to families in Russia, Aleksandra, found the Microtia and Atresia Support Group on Facebook. This online community helped her discover new information and connect with others around the world dealing with similar difficulties. The Facebook support group ultimately led to Aleksandra discovering the Ear Community— the organization that connected our team here at Oticon Medical with Liza and Aleksandra.
Through the connection, Liza was able to receive an Oticon Medical Ponto Plus. Now Liza can not only reach her own full potential, but her case helps to break down barriers in the community– doctors, educators and the public can now see Liza thriving. Her story will help make an impact in that other children and parents might not have as hard of a journey, because people will better understand the condition and the solution.
Liza’s improved hearing has made time with family and friends more enjoyable and she can now hear better while at school. Aleksandra tells Melissa, founder of Ear Community, “Liza sings all day long to the music through the Ponto Streamer. The devices are amazing and we have shared lots of tears of joy over this experience!”
This great story truly shows what can be accomplished when people come together to help each other.
Angela Holley wanted a sustainable hearing solution for her six-year-old son, Evan. Even when it meant calling insurance companies daily, Angela was Evan’s unwavering advocate. Now, Evan has what he needs and is a happier child who hears better than ever.
Here’s Angela Holley’s story–
Evan, who has bilateral hearing loss, started out wearing Cochlear hearing devices. We had a lot of issues and were constantly sending them in for repair. When we finally received the devices back from repair, our Audiologist was unable to program them. The Windows computer system wasn’t compatible with the device program, which caused yet another huge delay for us, and more importantly, for Evan. We were frustrated, and the Audiologist was frustrated.
During this time, our aggravation encouraged us to try demos of the Oticon Medical Ponto. We were excited by Evan’s response and couldn’t wait to get him a pair of his own. So, we sent in the order to the insurance company. To our surprise, it was denied. Because Evan had additional hearing loss from his last screening, we were truly in shock that his case was denied. So began the journey to getting coverage for devices that worked well for Evan…
What I Did to Make the Case
First, I appealed with a letter saying that the devices are not a want but a need. That they contribute greatly to him functioning as a successful individual. He needs the devices to be successful in school and to thrive with his peers. Then, I search for helpful information and made sure I knew about everything that could be helpful. Ear Community and Melissa Tumblin were an excellent resource. Finally, I collected any kind of documentation I could get to help build a case for Evan. Gather and submit documentation such as:
Letters from Evan’s teachers
Information from Evan’s ENT and speech therapist
Hearing Screen Results
Information from Evan’s pediatrician
Even a letter from myself explaining our own experiences in communicating with Evan—we were having to repeat ourselves more than ever
I didn’t rely on others to help get the job done, and I suggest the same to other parents. Make sure that you are organized and submit every piece of paperwork in a timely manner—there are deadlines that will affect the outcome. Work with the Audiology clinic that’s pushing through the paperwork, and make sure they’re meeting deadlines. Finally, follow up and then follow up again. Make sure information was received. It is a lot of work, but it can be done. Don’t just accept the denial and don’t rely on other people to do their part.
And hopefully, as with our case, you’ll see the light at the end of the tunnel. Finally, the insurance company approved coverage for one Ponto. Even though Evan needs bilateral aids, we were only approved for one and we felt lucky for that.
Well Worth the Work
All of us moms know we need to fight for our kids, and we need to remember that. Don’t rely on anyone else to fight our children’s battles— it has to be us to do that. What kept me going? The fact that Evan’s demo devices had him hearing better than he ever had before.
The day we got the demos, Evan walked into the bathroom with his shoes on. When he came out, he said, “Mommy, my shoes—they make noise.” Now, at night, he doesn’t want to take them off. It’s still amazing to watch him explore and experience little noises for the first time.
Fighting for what we deserved has helped shape Evan’s future. It’s a lot of work, but well worth it for a positive future for my son. I couldn’t have had a better partner along the way than Oticon Medical. The experience has been fantastic, and more than anything, the people at Oticon Medical LISTENED when no one else did.
Are you working to get insurance coverage? We can help. We can also help connect you with others who have successfully navigated the insurance process. Let us know in the comments section below or on Facebook or Twitter if you’d like help or to be connected.
The 117th American Academy of Otolaryngology (AAO) Meeting took place in September and the 29th Politzer Society took place in November. Ravi Sockalingam, PhD and Director of Clinical Research at Oticon Medical took part in the meetings, which both included several sessions on bone anchored hearing systems. Here’s Ravi’s account of the meetings and information shared and themes of each.
Some of the meeting sessions touched on surgical techniques– one particular session focused on loading timeframe. Loading is the time when we put the sound processor on the abutment. Patients will have surgery, and then we wait until the skin heals before we put the sound processor onto the abutment. The FDA indications say three months before loading. Many doctors feel it is safe to put the sound processor on at six to eight weeks post-op. There is now more evidence indicating that even a three-week loading does not increase the risk of an implant extrusion or adverse skin reactions. Dr. Jack Wazen at Silverstein Institute in Sarasota reported no differences in outcomes between loading at three weeks and loading at six weeks. The outcomes at 3 weeks loading were reported to be good with no revision surgery or implant extrusion, and the skin reactions were either nonexistent or very minimal.
Three week loading is a discussion for adults with normal bone quality. Surgery for children was also discussed. There is some development on the pediatric side about whether the surgery should be done in a single-stage or two stages. Typically, surgery in children is performed in two stages because they have softer bone.
Surgeons would want to put the implant in first, wait for three months, and then put on the abutment. Then they would wait for another three months or so to be fit with the sound processor. There are centers here in the United States that do the surgeries in one stage. They place the implant and the abutment at the same time, just as they do in adults, and wait for three months before they load the sound processor. It depends on the quality of the bone before the surgeon decides whether it is going to be single stage or two stages. The rule of thumb is, if a child is over 12 years old, the surgery is not staged, provided the quality of the bone is good. If the child is under 12 years of age, then surgery is staged.
For a long time the surgical technique employed was one that involved thinning of the skin and removing tissue around the implant site. Later, a linear incision technique, whereby a small straight line incision is made, was adopted by many surgeons in Europe and in the US. More recently, more and more surgeons are using a linear incision technique with minimal or no tissue removal. These surgeons are reporting better skin outcomes with this technique.
There are also, surgeons, particularly in the US, who have been using what we call a punch technique. They make a very small, circular 5 mm punch and put the implant and abutment in. Among the surgeons who perform the “punch” technique are Dr. Wayne Shaia from Richmond, Virginia and Dr. Daniel Coelho from Virginia Commonwealth University, also in Richmond. I always joke that Richmond is the punch capital of the world now. They are reporting good outcomes with this technique.
The linear incision technique with minimal or no tissue reduction, and the “punch’ technique aim to preserve as much soft tissue as possible. Often times these techniques are collectively referred to as “Tissue Preservation technique”. Long term data indicate that this technique results in quicker healing, better cosmetics, fewer postoperative complications, and shorter surgery time.
The modern design of our implant itself lends itself to tissue preservation surgery very well. We have a smooth titanium surface on the abutment that adheres to the skin and supports it very well. You may have to use the longer abutment if you are using the tissue preservation technique because you are not removing any tissue. You will typically use at least a 9 mm abutment. In some cases, surgeons use a 12 mm abutment. There is an ENT professor at the Karolinska Institute in Stockholm, Sweden who has been following patients for five years using the non-skin reduction technique and a longer abutment. She has been reporting very good outcomes, even up to five years.
The next hot topic is a transcutaneous solution. In a transcutaneous solution the battery and other components are on the outside. You have to use the power to transmit the signal. Implanted inside are magnets and a receiver. The receiver will transmit the vibrations to the bone. “You are still going to lose some energy across the skin. It will never be better than the bone conduction vibrator that you would use to measure bone conduction thresholds, because that oscillator is in tight contact against the head. For children who are under the age of five and cannot have the surgery, we put a processor on a soft band. You try to make it as tight as possible. If it is too tight, there will be an indention in the skin, and that can be painful after a while. That is what transcutaneous solutions do. Cosmetically, it is appealing, but you are not going to have the same amount of output and gain that you would from a percutaneous system.
Bone Anchored Solutions Bone Anchored Solutions are getting more public awareness. We are reaching out to consumers directly through social media. We also have patient advocacy weekends and retreats, picnics, and so forth. The consumers are becoming more knowledgeable about bone anchored hearing systems, and they are educating other potential consumers.
Patients are empowering themselves with the information they find online, and in some cases they’re even educating their professionals. I work closely with some of the surgeons and they say some of the patients show up saying, “I need a Ponto. Do you do that? What is the price? When can you do it?” They are not coming for an evaluation or opinion from the doctor. More and more of that is happening, especially with the baby boomers, who are better educated, particularly those living in urban areas. This is, in fact, a topic that is being discussed in current conferences.
Do you have a question for Ravi? Let us know in the comments section below.