Life Before and After Treatment for Single-Sided Deafness
Debbie Dobbs: My SSD occurred in the third grade. I had the mumps virus. I was lucky in that my speech sounds had developed.
AudiologyOnline: What was it like living with SSD as a child?
Debbie Dobbs: I look back and wonder what it was like for my parents when they first found out my hearing was gone in my left ear. As a parent, I can only imagine the shock, grief, and sadness they felt. Instead of dwelling on these emotions, they pulled themselves together and researched all techniques that would help me to function in the world and be successful. There was no internet then. My family moved every two to three years for my father’s job. I think having SSD made it harder for me to go to new schools, yet these new experiences eventually helped mold my personality so that I became an outgoing person.
My mom was my source of encouragement and advocate. I took lip-reading during the fifth and sixth grades at a university audiology clinic. Twice a week, my mom would pick me up at lunchtime and drive me to the appointment. I only knew that I could do it: I would go to college, I was me and I could be successful. When I was young, my mom also talked to my teachers about my deafness and requested that I sit in the front of the class on the left so I could hear. I still try to sit that way as an adult.
I didn’t want to be different from the other children and chose not to tell them about my SSD. My close friends did know. However, this resulted in other people thinking I was not listening or didn’t care. I didn’t realize this until I was much older. I think I lost friends along the way because of this. I also found it very difficult to be in a large group of people, at dances with loud music, in restaurants with music, and in situations with several people having multiple conversations.
AudiologyOnline: What was it like living with SSD as an adult?
Debbie Dobbs: As an adult, I am open about having SSD and telling the person I am speaking with that they need to be on my right side. Now my friends ask me which chair I need to sit in to hear at restaurants. I felt overloaded with too much noise for a long time and needed to tune out, put in an earplug, or retreat to a quieter environment. Dating was hard. When I was in the car, my good ear was next to the passenger window. I tried to sit with my back to the window. My first date with my husband did not go well because he thought I was ignoring him.
AudiologyOnline: How did untreated SSD impact your life with your family, friends, and/or at work?
Debbie Dobbs: When I couldn’t hear my family, I would say, “Look at me when you are talking so I can hear better.” This allowed me to read lips. There were many times I would become frustrated. I would watch others not struggling with sound and hearing music in real stereo sound. However, I accepted this life struggle and tried to utilize all the tools I had learned. I thought it would be interesting to ask my family and close friends how they perceived me with my deafness. Here are some of their answers.
- Spouse: “I had to learn to make sure Debbie and I had eye contact to be sure she heard what I was saying. At times, Debbie’s inability to hear what I was saying became frustrating. Then, I would realize all that she has overcome and accomplished, and then become frustrated with myself for that feeling. Despite Debbie’s disability, she is a fully functioning person. The addition of the Ponto™ has enhanced her life and ability to interact with others more easily.”
- Daughter: “My memories are mostly funny ones, which I hope makes you laugh and doesn’t discount how hard it must be for you. As kids, we had so much fun in the back seat of the car saying bad words and seeing which one of us would get in trouble first and how many times we could say those words (softly then louder) before getting into trouble. We could sneak up on you or hide under the bed without you knowing. And the embarrassment and hilarity that accompanied shopping with you and always never hearing the clerk correctly will stay with me forever. Now, when wearing your Ponto, we have to be on our best behavior…lol!”
- Sister: “I still can’t remember which side you are deaf on. I only know I’m on the wrong side when you don’t answer me and then you make fun of me for not knowing by now which side it is.”
- Friend: “I think it’s difficult to have a disability people can’t visually see. They tend to forget or just don’t realize there is a problem as they cannot see it. Wearing your Ponto helps you hear in our small group settings.”
AudiologyOnline: How did untreated SSD impact your career?
Debbie Dobbs: I was a teacher for 20 years. I positioned my desk at an angle to the wall so the students could only come up to talk to me on my right side. I couldn’t detect where sound was coming from, so many times it was an issue when kids were misbehaving. As I looked around, I could usually figure out what was going on. However, I’m quite sure I missed some of those situations. I never told my superiors that I couldn't hear, as I managed my evaluations and interviews well one-on-one.
AudiologyOnline: What prompted you to get your SSD treated and when did this occur?
Debbie Dobbs: I would go to the ENT every five years or so and ask if there was something that could help me hear better. After my kids left home for college, during my visit to my ENT, he looked at me and said, “ I can help you with a bone anchored hearing appliance.” I cried right there in the chair.
AudiologyOnline: Who did you see for treatment (personal care physician, audiologist, other?)
Debbie Dobbs: My ENT is Dr. Walter Kutz at UTSW in Dallas, TX. He performed the implant surgery and used the Oticon Medical universal abutment. I am thankful that he knew which abutment to implant so I had the opportunity to choose my hearing device. I think this should be a priority for bone anchored hearing device manufacturers to educate the ENT surgeons who perform this surgery. My audiologist at UTSW is Rachael Bell.
AudiologyOnline: What treatment option did you first try (e.g., regular hearing aids, a CROS hearing aid system, or bone anchored device)? Please describe your experience with this first treatment.
Debbie Dobbs: A CROS hearing aid. I made an appointment with a local hearing clinic and the audiologist prescribed a CROS hearing aid system. I wore the hearing aids for about a week. During that time, I was at a round table meeting and just couldn’t hear. The CROS was interfering with my good right ear, so I took them out. When I returned them, the audiologist was perturbed and said I didn’t try hard enough. Then she said most SSD people are not successful in life with an attitude that I wasn’t successful. I told her (with a sassy tone) that I was successful; I had taught 20 years in high school, and I had a master’s degree.
AudiologyOnline: What prompted you to try Oticon Medical’s bone anchored hearing system (BAHS)?
Debbie Dobbs: The audiologist at UTSW showed me a Cochlear BAHA and the Oticon Medical Ponto and said both would transfer the sound into my good ear. She gave me pamphlets to take home and read. When I returned, I just didn’t know which to pick. I asked questions and decided on the Ponto.
AudiologyOnline: Some people hesitate to get a BAHS due to the surgery. Can you briefly share your experience with minimally invasive Ponto surgery and recovery (e.g., time it took out of your life, any pain or discomfort experienced, etc.?)
Debbie Dobbs: The surgery didn’t bother me because I was so excited to get the implant. I had always said, even as a child, that I would be open to helping research on how to improve sound for people with SSD. Recovery was as described by the doctor with no problems. I had to sleep on my good ear, so the surgical site wasn’t affected by pillow pressure. I went to my post-surgery appointment and snapped on the Ponto. The audiologist programmed it and for the first time I could hear much, much better! At first, it was hard to snap on but with time, it became easier.
AudiologyOnline: Which Ponto device(s) have you used since? (e.g., Ponto 3 SuperPower, Ponto 4, other?)
Debbie Dobbs: I started with the Ponto Pro and currently have the Ponto 4. I’m looking forward to getting future upgrades once they become available, and Medicare will cover the cost.
AudiologyOnline: How has wearing a Ponto BAHS affected your life (family, social, and/or work)?
Debbie Dobbs: My family loves me using the Oticon TV Adaptor accessory, so I don’t keep asking questions. I hear the tv perfectly; it’s amazing. I contribute to conversations because I hear all the words from other people. They can tell when I’m not wearing it. I love the ConnectClip™ audio streamer especially when riding in the car. I also love the Oticon ON app on my phone. My Ponto has made a difference in my life and my relationships.
AudiologyOnline: What would you want someone considering whether to treat their SSD to know that we haven’t already covered?
Debbie Dobbs: I hear better--period! Wearing a bone anchored hearing system will improve the quality of your life. Loud environments are still hard. Small group settings are great and large lecture type rooms are great. Music sounds better. This is the best thing I’ve ever done… to improve my hearing in a world where sound is a priority.
Having SSD has been a lifelong journey. This interview did bring home a point that I had not recognized but made me uncomfortable. A few people said that when they were with me, they felt it was up to them to announce to others I was deaf in one ear. Now, I will tell them that it is not up to them. If they see a problem, it is okay to tap me on my shoulder, but I am the one who chooses to say I’m hard of hearing or not.
* The views expressed in this interview are those of the interview subject. Federal law restricts the sale of bone anchored hearing devices to hearing healthcare clinicians or on the order of a clinician. Please contact your hearing healthcare clinician for any questions you may have regarding a bone anchored hearing device and whether it would be the right solution for you.