6 Ways to Become Your Own Hearing Loss Advocate

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.

• 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?

Taking Care of Business

Before my last adjustment, I was very eager to gain more volume and was hoping that my A, B, and C profiles would be adjusted to improve the quality of my hearing in situations that had been difficult since my last adjustment (see last blog post). Additionally, I had wanted to finally see a larger gain in my hearing test scores, as my results have not shown much improvement since baseline due to the amount of fluid in my ear. As I have mentioned in past post, my healing has been quite slow.

My Engineer, Michelle, and I started my adjustment appointment by reviewing the questionnaire that I filled out describing the situations that are still difficult, as well as my general feelings about my A, B, and C programming. I was essentially told that all of the situations I described as being challenging were also situations that were difficult for people with normal hearing. One of the examples she provided was in regards to my ability to hear on a cell phone but not on my work phone. She expressed that some phones are just more difficult to hear on compared to others. Another example was in regards to traffic and car noises. She said that when walking near traffic or when driving on the highway, it is challenging for people with normal hearing to follow conversation as well. Overall, I was told that my challenges were “normal” and that this is how it is for everyone else, so there is not much that can be done to improve these situations through adjustments. This was a bit difficult for me to believe since most people I am around function just fine the situation’s I described. But okay, moving on…

After Michelle concluded my hearing test, she shared that my test looked great and that she was very happy with the progress that I have made. I was so ecstatic hearing this! I couldn’t wait to see how much gain I had received! Was my hearing now in the normal decibel range? When she handed over the evidence of my so-called success, I my heart sank into my stomach. What on earth was she talking about? There was barely any change from baseline (before surgery) to my current test! The only exceptional gain I saw was at 1500 and 2000 hz. Otherwise, my results were almost the exact same as my baseline scores. How could she describe these results as “great”? I have been hearing impaired long enough to understand what my audiograms are telling me and I feel very confident that my results were far from "great".

Once I brought myself back to reality, I probed Michelle about my results and continued to express my concern. She brought up a few factors to explain why my results are "great".

First, 1500 and 2000 hertz is among the frequencies in which most people speak, and seeing a large gain at these frequencies demonstrates the improvement in my word recognition scores (66% to 88% when tested at 80 decibels). Please note that most people talk at/around 40 decibels (not 80).

Second, the severity of my loss before surgery needs to be factored into the equation. Since I had a great deal of hearing loss prior to surgery, I should not expect to ever see normal results with the current technological capacity of the Esteem. I hoped for, but never expected to ever have normal hearing from this surgery. However, I did expect to have my scores brought up at least 30-40 decibels in most areas, as this is what I was told prior to surgery.

Third, my personal feeling, regardless of what my test results are saying, need to be considered. What can I say. Going into this appointment, I was happy with my progress and I truly feel like I hear better than what is being projected in my results, especially in comparison to my hearing aided scores. There are times when I have to check to make sure my hearing aid is still on since I hear so much better out of my Esteem.

I wasn’t exactly sure what else to say after this, so we moved on with adjusting my A, B, and C programming. After testing out a few options, the changes we decided on were, increasing the volume on my A setting, adding treble on my B setting to help project voices more in noisy situations, and to remove some base from my C setting so that my ears do not feel like they need to pop. Unfortunately, in our attempt to increase the volume, after about 10 decibels of gain, I began to experience feedback. Michelle said that I had reached my plateau and that the power in the settings I leave with will be the best that I will see with the Esteem. I am at a point in the process where I have finished healing so any barriers such as healing or fluid, would not be affecting the Esteem. So while I can make other tweaks with the range of frequencies, the base, and treble, the loudness or decibel gain I am experiencing is the best I am going to get. Wow… Could this appointment get any worse!!

Being implanted with the Esteem has enhanced my life in more ways than I could have ever imagined and while my progress has been slow, I have been happy with the gains I have made. However, I didn’t think that I was even remotely close to the end of my progress by any means. I was sure that I had more room to grow and that I would see more gain. Throughout my appointment, I continued to express my concern about this but I felt like my concerns were being dismissed and that there were no other options. That I should accept this defeat and move on with my life.

As you can imagine, I left my appointment very upset and discouraged, but I tried to stay positive and not let this information stand in the way of the capacity in which the Esteem has impacted my life in a positive way.

As time past, I continued to struggle with my new settings and hearing in difficult situations, such as large meetings/trainings, speaker phone, hearing in the car, music in the car. I realized that although I have made great strides in my hearing, I do very much still consider myself as a hearing impaired individual. I replayed my adjustment appointment in my head over and over again and while I understood what my engineer was saying about my progress, something in my test scores just did not feel right to me. I decided to take all my results so far and put them together in a table so I could begin to grasp and understand my test results. This table is shown below:

	125	250	500	750	1000	1500	2000	3000	4000	6000	8000
Baseline	DNT	35	35	50	55	80	80	75	75	100	NR
Aided	DNT	DNT	20	25	25	45	40	50	50	65	40
Esteem 1	20	25	30	45	45	55	50	65	75	80	DNT
Esteem 2	DNT	30	30	45	55	50	55	70	80	85	NR
Esteem 3	DNT	40	35	45	55	40	35	60	70	85	NR
Change (B-E3)	n.a.	5	0	-5	0	-40	-45	-15	-5	-15	n.a.

It was interesting for me to see in this table how my scores have changed just across my Esteem results. It seems that at some frequencies, my hearing is getting worse as time goes on.

From this table I created a graph in order to visualize the change (or lack of, I should say) from baseline (before surgery) to now. While my Esteem score is generally better than my baseline score, the gain is very minimal (about 5-10 decibels), except at 1500 and 2000 hertz.

I also wanted to see how my aided results compared to my now results, which is illustrated in the graph below. While these results are similar, my hearing aided score is closer to the normal decibel range.

What I find to be the most interesting piece (that I am still trying to put together in my head) is that my perceived gain is not close to what is plotted on these graphs. I feel that I am able to hear much better with my Esteem than I was ever able to hear with or without hearing aids.

Anyways, I decided it was time to, yet again, express my concern so I emailed Michelle and let her know that my results are still troubling me and that before I accept this as “the best I am going to get”, I want to make sure that I exhaust all possible reasons why my scores show such little gain. I do not want to ever have any regrets about this and I need to be sure that my concerns are not being pushed aside and that I am getting the support I need from Envoy. I am not one to give up a fight easily and I will be damned if I give up on this journey now, especially after all I have been through.

After not receiving a response for a couple of days, I decided to email Dr. Marzo as well. He said he needed to discuss things with Michelle before he got back to me. More waiting.

Almost a week past, so I decided to contact Melinda (the head engineer). Again nothing for almost a week. 

It had been about two weeks with no response from anyone, so this past weekend, I decided to follow-up with everyone again as well as contact every single person that I had ever been in contact with at Envoy. Needless to say, I had a pretty full inbox this morning and have officially become a part Envoy Medical's Most Wanted List for my stalking tendencies.

But most importantly, I finally received the support from Envoy that I had been hoping for. Melinda reviewed my results and informed me that there is, indeed, something that does not look right with my results and I am scheduled to meet with her on June 16^th so she can conduct some additional testing. While I am disappointed that I have not gotten the results I hoped for, I am also relieved that there is still hope in moving forward and that it is possible that my results can and will improve. I pray that this is just beginning to my happy ending.

Envoy Questionnaire for 2nd Adjustment

Prior to each adjustment appointment, Envoy requests that patients fill out a questionnaire addressing their overall level of hearing, such as what sounds are comfortable as well as any situations that have been difficult to hear in since their last adjustment. The overall purpose of this questionnaire is to help the Envoy Technician/Engineer adjust Esteem settings as deemed necessary. Below I have outlined my responses from both my first questionnaire and my second questionnaire so you are able to see what specific issues have been addressed and what still needs some tweaking. Please note that this questionnaire may sound a little negative as I am mostly reflecting on difficult situations so that I can hopefully get these issues fixed to make these situations easier.

What profile/volume do you use most of the time?

December 2011: I use C3 or C4 most of the time. If I am in a noisy environment, B3 is most comfortable.

April 2012: Up until mid March, I primarily used the A setting (working my way up to 10), as this setting seemed to provide the most clarity for me. However, in the last couple of weeks I have found that the A setting is not providing me with enough volume. So, I am currently using C10 on an everyday basis. While I feel that the A setting provides me with more clarity, the C setting provides me with the volume I need to hear in conversation. The A setting is lacking volume and the C setting is lacking clarity.

How often do you change your settings?

December 2011: I progressed through the settings fairly quickly. I increased the volume about every two days and was at comfortably at C3 (without having to go back to the B settings every once in a while) after about two weeks. Since then, I have been going up and down from C3 to C5 depending on how much head congestion I experienced on a particular day. 

April 2012: It took a while for me to progress through the settings. Up until February I was “stuck” at A7 and unable to move forward due to having feedback on the higher settings. However, once I made it past this threshold, I spent about a week per volume setting until I made it up to A10 around March. For most of March I stayed at A10 since this was the most comfortable, however, toward the end of March I felt that I was not getting the boost I needed and have been using C10 for most of April. While this gives me the volume I need, I am not always getting the clarity I need from this setting. Also, sometimes I feel a lot of pressure in my ear on the C setting. It almost feels like my hear needs to pop or something.

Which other settings have you used?

December 2011: I have used them all at some point in the progress.

April 2012: I have used all of them at this point in the process. However, I almost never use the B setting, even in loud environments.

Are there environment(s) where you feel that you may have some issues with your hearing? What are the environment(s)? What were the issue(s)? What profile/volume did you try to use in that environments(s)? What profile/volume did you change while having the issue(s)? How did this impact your hearing? Did you ask a normal hearing companion if they had a similar experience to any degree in this environment?

Road and Car Noises While Driving. 

December 2011: These noises sound loud, muffled, and interfere with my ability to understand what others in the car are saying. If I turn it down to the B settings this produces less interference. I asked my husband and he said that car noises are muffled, can be loud, and can sometimes interfere with his ability to hear. However, he is almost always able to carry on a conversation while driving with me or others. 

April 2012: These noises are still loud and interfere with my ability to hear others in the car and on the phone. If I change to the B settings this produces less interference, but also makes voices softer so it is still difficult to hear. The B setting works okay when I am on the phone, but does not work as well when I have others in the car with me. I have found the A setting to be the most comfortable but will usually have to turn down the volume to produce less interference. It is often difficult to change my settings while I am driving, so most of the time I just “deal with it” as best as possible and ask others to speak up.

Music from a speaker (e.g., my computer or on the radio) or with my ear phones (e.g., ipod).

December 2011: While live music sounds great, music from these venues do not sound natural to me. Parts of songs will sound okay, but then all of a sudden there will be a squeaky noise that is a bit distorted and feels uncomfortable to my ear. I have tried different volume combinations on my Esteem and the music source and cannot find a combination that feels comfortable for me. It is either too soft for me to really hear it but no squeaky distortion, OR it is loud enough for me to hear with the squeaky distortion. The setting that fits "best" is B3. I asked my husband to put the music at a volume that is comfortable to him and told him what I experienced and his reaction was not the same.

April 2012: Music on my ipod with headphones is no longer an issue. I had stopped listening to music on my ipod for a while but when I went running for the first time towards the end of March I found that the music now sounds GREAT and on any setting too! However, when running I have found that the sound of the wind blowing often interferes with my ability to hear the music. It is the worst on the C setting but still pretty bad on the A setting. I have not tried the B setting.  In regards to music on the radio in my car, this is still producing feedback and does not sound great. However, it is better than it was before. Also, music from my computer still sounds a bit muffled. I have to turn the volume very low to be able to hear it without feedback, which then makes it difficult to actually hear the music. Women singers sound squeaky and “too loud” which makes it a little unclear. It almost sounds like a blasted speaker. This is sort of difficult to explain…

Large Group Meetings at Work.

December 2011: I have a difficult time hearing people at a distance from me and find myself pretty dependent on looking at people to understand what they are saying. Background noise, such as the heat blowing, interferes with my ability to hear and understand people.  The volume I found to be best in these situations is C4 or C5. I did not ask others about this situations but everyone in the rooms seems to be able to follow.

April 2012: This is better than before, but still difficult. While there are some people I can hear very well without even looking at them there are others that I still have a difficult time hearing. I started to have a really difficult time with the A settings mid-March as this setting is not providing me with enough volume to hear people across the room from me. The C setting has probably been the best for me recently.

Watching TV.

December 2011: I have a difficult time hearing my TV and am still pretty dependent on closed captioning for understanding. C4 or C5 is the setting that is the easiest for me. My husband says that 13 is a comfortable volume for him and I liked to have the volume at about 23 so that I can actually hear. Turning my device up helps a little, but not enough that I could hear comfortably at 13.

April 2012:  I still have to use closed captioning to follow movies or TV shows. When I turn the volume up so that I am able to hear, I feel like there is some distortion in the sound. Some TV’s are worse than others and it seems to be worse when I do not have my hearing aid in my other ear. I also find that commercials and background music, etc. seem to be very loud while conversation seems like it is not loud enough. This really makes watching TV tough because I have to turn it loud to hear what is being said but then I am blasted with sound when commercials or background music, etc. is being played. This is mostly on the C setting so turning it to the A setting helps this issue, but then I am not getting the volume that I have with the C setting.

Group Settings/Noisy Places (e.g., restaurants).

December 2011: I have a difficult time filtering out background noise in these settings and find that people voices blend with the background noise. I still have to read lips in order to understand and follow along in conversation. I find that one-on-one interaction is easier than group settings. The A settings make everything too quiet and the C settings are too loud. I found the B programming to be best in this type of setting. When I have asked people about this, they do tell me that the place is just "really loud"; however, I feel like they are able to understand everyone and follow along in conversation pretty easily.

April 2012: I still have a difficult time with background noise. While the B setting helps filter out some of this background noise, I find that this setting also makes peoples’ voices too soft for me to hear. I have found the A setting to work best in noisy situations if I turn it down a few notches.

My Work Phone.

December 2011: I am able to hear pretty well on my cell phone but I have a VERY difficult time talking on my work phone. Voices are a bit distorted and crackly and I actually find my hearing aid to produce a clearer sound. I have tried a few volume combinations with my Esteem and the phone, and still find it difficult. I did not ask others about this but all employees use the same type of phone regularly without issues.

April 2012: I still have some trouble hearing on my work phone but this has gotten better over the last couple of weeks. I have found A7 or A8 to be the best setting for talking on my work phone. Anything louder sounds distorted to me.

Traffic/Wind

December 2011: n.a.

April 2012: When I am walking down the street to get to my office, I have found the cars driving by to produce a noise so loud that I am unable to hear anything else out of my Esteem ear. If I am talking on the phone and cars start driving by, I cannot hear anything that is being said on the phone.  I have found the exact same thing with the wind. Specifically, when I am running, listening to my ipod, I am not able to hear the music when the wind is blowing.

It often seems that when I am first adjusted or when I change the settings everything is noticeably better, but as time goes on I get used to things and want more. While my last adjustment did help with many of the situations listed above, things have not been perfect so I hope that after some more tweaking everything will get better and better!