After having gone through what I did to get answers from Envoy and to have my concerns taken seriously, it has really got me thinking, well actually, wondering, about all the other Esteem patients out there who have felt the same way about their results but have been told that everything is great, when really there was something wrong or something more that could have been done to make them hear better. It has also made me realize how important it is to be an advocate for yourself.
These doctors, engineers, representatives, whomever, have more patients than they can probably keep up with. If you are going along like everything is fine and do not communicate your concerns, as small as they may seem, absolutely nothing about your situations is going to change. At the end of the day, it is YOUR life and YOUR hearing and only YOU know what you are experiencing. You cannot expect them to read your mind; you must be proactive if you want to see, or in my case, "hear", a difference.
If you would have asked me to advocate for myself 10 years ago, I probably would have laughed and rolled my eyes at you. Not wanting to accept my hearing loss back then, I tried to pretend that it did not exist. I didn’t care to know or understand my results, what they meant, or how they would potentially affect my life. I didn’t care to know what types of technology could potentially help me and make my life easier. What I realize now is that the only person I was hurting was myself.
I cannot say that I am an expert on the topic but I have come a long way from who I used to be. I wanted to share a few things I have learned through my experiences so I put together some “tips” about how YOU can become your own medical advocate.
1. Stay up to date on hearing loss technology. I cannot express how important it is to stay up to date on all technilogical aspects of hearing loss. I do not have many regrets in life, but this is something I do regret not doing more of (even to this day). Hearing loss is a very "up and coming", as I like to call it, disability, and while insurance companies are still not covering enough of of the cost, there are so many different types of assistive listening technology out there, from the hearing loop to the Esteem implant, all of which are designed to make our lives easier. You just got to get online and find them. I have to say that there is no way I would have found out about the Esteem implant if my mom hadn't heard something on the radio about it and I truly cannot imagine my life now without the Esteem. While I have had my fair share of troubles with the Esteem, it has changed my life for the better in more ways than I can express in this blog. So get out there and research, research, research! Do I need to say more?
2. Come prepared to your appointments.
These doctors, engineers, representatives, whomever, have more patients than they can probably keep up with. If you are going along like everything is fine and do not communicate your concerns, as small as they may seem, absolutely nothing about your situations is going to change. At the end of the day, it is YOUR life and YOUR hearing and only YOU know what you are experiencing. You cannot expect them to read your mind; you must be proactive if you want to see, or in my case, "hear", a difference.
If you would have asked me to advocate for myself 10 years ago, I probably would have laughed and rolled my eyes at you. Not wanting to accept my hearing loss back then, I tried to pretend that it did not exist. I didn’t care to know or understand my results, what they meant, or how they would potentially affect my life. I didn’t care to know what types of technology could potentially help me and make my life easier. What I realize now is that the only person I was hurting was myself.
I cannot say that I am an expert on the topic but I have come a long way from who I used to be. I wanted to share a few things I have learned through my experiences so I put together some “tips” about how YOU can become your own medical advocate.
1. Stay up to date on hearing loss technology. I cannot express how important it is to stay up to date on all technilogical aspects of hearing loss. I do not have many regrets in life, but this is something I do regret not doing more of (even to this day). Hearing loss is a very "up and coming", as I like to call it, disability, and while insurance companies are still not covering enough of of the cost, there are so many different types of assistive listening technology out there, from the hearing loop to the Esteem implant, all of which are designed to make our lives easier. You just got to get online and find them. I have to say that there is no way I would have found out about the Esteem implant if my mom hadn't heard something on the radio about it and I truly cannot imagine my life now without the Esteem. While I have had my fair share of troubles with the Esteem, it has changed my life for the better in more ways than I can express in this blog. So get out there and research, research, research! Do I need to say more?
2. Come prepared to your appointments.
- Be aware of how you have been hearing. One of the first things your doctor asks you when you go in for an appointment is, "How have things been since I last saw you?" It has most likely been 3-5 months since you have last seen your doctor, so, off the top of your head, would yo be able to generalize your experience thinking back 5 months? Probably not. When I have been asked this in the past, what I can recall is how things have been recently which is only part of how "things have been". Additionally, it is easy to forget about different aspects of your hearing when trying to answer on the spot. Therefore, I have been trying to write a few sentences about my hearing every couple of days or least once a week. These are the types of questions I ask myself: Did you have a good hearing day or a bad hearing day? What was difficult for you to hear? Are there specific peoples voices who were more difficult to hear than others? Was there anything that may have contribute to why you were not hearing well (e.g., sick, tired, etc.)? What setting did you use today? What setting helped make things better? How social were you today? Did you have a lot of meetings? The bits of information you get from answering these questions may seem menial, and the task may seem like a burden or waste of time, but it is these little things that help us remain aware and stay on top of our life. In addition to this, it can also help us detect patterns overtime, which could give reason to a concern or help you more quickly adjust. For example, if you have been having a lot of "bad hearing days" recently, but your social interaction has generally been minimal, your lack of social interaction could be why you feel like you are not hearing as well. Communicating regularly, even though it may be difficult for us, helps build and strengthen the connection between our brains and sound. If we are not practicing everyday, this could make that connection further apart making it more difficult for us to understand speech. Most importantly, review this information before your appointment so that you are able to quickly and easily recall how things have “typically” been since you last saw your doctor as well as anything in your experience that may be concerning. If you do not do this, changes are you will probably forget and this could be valuable information when trying to adjust your settings or even identify a problem. The more information you can provide to your doctor, the easier it will be for them help get you where you need to be.
- Bring a list of questions. Surgeons and most doctors these days have very little time to meet with their patients, which is why it is no surprise that most of us have probably felt "rushed" out of an appointment on occation. With the pressure to "get in and out" when I have a million things going through my head, I have often felt flustered and end up forgetting the quesitons I had hoped to ask. I have found that it is often difficult to recall questions that randomly pop into my head, so I have started to track all of my questions in the "Notes" IPhone App, as I almost always have my phone with me. This allows me to conveniently track my questions in the moment without forgetting. Therefore, if you do not have time to compile a list of questions before your appointment, your questions will already be there for you! By bringing a list of questions with you to your appointment, it will also show your doctor that you mean buisiness and there is no way you will leave that office feeling more lost and confused than when you got there. When asking your questions, I strongly advice you to be very direct and detailed as vague questions yield vague answers.
3. If you do not understand the answers to your questions, keep asking until you do. I have found that many doctors try to be careful with their words to avoid misinforming you or saying something that will end up bitting them in the butt, which is why they often beat around the bush when responding to your questions. Do not accept general answers that leave you with more questions than you came with. Ask the question again. Ask the question in a different way. Ask about a specific scenario you can think of. Do not stop until you feel good about the answer you have gotten. Additionally, I have also found that asking a detailed question about the general Esteem population (oppose to questions directly related to yourself) will help you obtain the answer you are looking for. To give you an example (this may not be the best but its the only one I can think of), when I asked my Engineer about the gain I should expect to see from the Esteem, her reply was "I don’t like to give patients exact number’s as to what to expect their gains will be. Every patient is different and outcomes can be very different too." I reframed my question and emailed her back, "What is the decibels gain that people typically see as a result of the Esteem? What have you typically seen in your patients?". I finally got the answer I was looking for! (this was the response in case you are interested - "I think most patients see an average of 30-40 decibels of gain, but this is just a ball park of what I’ve generally seen.").
4. Make sure you are getting the most out of your doctor appointments.
- Bring a family member or friend with you to your appointments. I have found that I often spend so much time concentrating on what my doctor is saying that it is difficult to retain the information. When I try to take notes during my appointments so that I don't forget what the doctor has told me, I often miss out on important parts of the conversation. Therefore, I almost always bring a family member to my doctors appointments (or even 5 as I did for my Pre-Op surgery!). I have found that having a family member present ensures that no important information falls through the cracks. My husband is often my note taker, so that I can focus on hearing and responding/asking questions as appropriate. Additionally, I have found that whomever I bring with me always think of questions that I would have never thought to ask. For example, when my husband attended an appointment with my audiologist a few years back, he asked a bunch of questions about my audiogram and what everything respresented. I had thought I understood this, but soon realized that I misinterpreted my results.
- Strive to understand what your test results mean. Seeing how many times I have actually seen an audiogram and how easily I misinterpreted the results (as explained above), I found it very necessary to add this point. We see our audiologists once or twice a year, and therefore, see an audiogram just as little. With such a long time lapse between appointments, it can be easy to forget what every piece of data on your audiogram tells you. Therefore, it is important that you have your doctor/audiologist/engineer/etc. review your results with you in great detail, literally point by point. Have them also explain to you what each of the test tell you about your hearing. It is important to also have them bring up your past results so you are able to see how your results compare across the years. The more you know, the better off you will be. Knowledge is power.
5. Ask for copies of your medical records. It is important that you not only understand what your test results mean, but also what the change overtime means. Every time I have an appointment, I make sure to request my results so that I can have them for my own records. Looking through all of my test results over the last couple of years has shown me just how quickly my hearing decreased over such a short period of time. What is even more interesting is when my hearing loss came to a halt, my word scores still decreased indicating that my brain was not making the proper connection. If I would have noticed this a few years ago, I could have gotten into Aural Rehabilitation, and helped myself in conversation instead of shying away from communication all together.
6. Follow your intuitions. There have been numerous occasions in which things have not felt right during this process. Most of them I had expressed, but I kept getting the same responses. I think you are doing great! I am happy with your results. Your difficulty in these situations is normal. You just have to give it time. If you think about it, what are you supposed to say when a doctor tells you this? They are obviously highly educated, much more so than yourself. What are you going to do, believe a bad feeling you have in the pit of your stomach or a highly educated and trained individual? My response used to be the latter, but here is what I have learned. If you have ANY bad feeling at all, do not give up hope! Keep asking questions until you the answers you need, get a second opinion, or even bring a friend or family member to your appointments to get their opinion on the doctor and how they address your concerns. Yes, you may annoy your doctor with all of your badgering questions, but it is better to be safe than sorry! The story I am about to tell is a bit extreme but I hope it helps make my point clear. My best friends mom, whom I have known since preschool, was diagnosed with breast cancer when we were in 5th or 6th grade. I didn’t know this at the time but she had 3 or 4 doctors tell her that she was going to die and they refused to try any type of treatment with her. Did she give up? Nope! She followed her intuitions and was finally able to be heard! She found a doctor who was willing to try treatment and, well, she survived cancer. Twice.
Life is just too damn precious for us to settle for less than we deserve and no one can fight this battle but you.
It’s YOUR life and YOUR choice. So what’s it gonna be?
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