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?

Future Changes to the Business Model at Envoy Medical

It was recently brought to my attention that the the business model at Envoy Medical, the company that created the Esteem hearing implant I have in my left ear, has changed. Just to give you a little background (if you are not already familiar), prior to this change, patients went through Envoy Medical in order to connect with a surgeon and obtain the Esteem implant. At the beginning of the process, you would be assigned to a Envoy representative who would then be your point person for questions about the implant as well as figuring out payment plans and filling out necessary paperwork. When I went through this initial process during the summer of 2011, I spoke to my surgeon, Dr. Marzo (the surgeon in Chicago), once before surgery, and I was not able to speak with him until I had paid my surgeon fee and set a surgery date. Almost all of my initial contact was with my Envoy Representative. Currently, there are ~13 surgeons whom are able to perform this surgery across only ~13 locations across the United States. Therefore, it was part of Envoy's procedure to fly their Engineer's to a patient's location for activation as well as any subsequent adjustments down the road.  Since surgery almost a year ago, almost all of my contact has been with an Envoy Engineer. 

However, I found out that after a certain time frame, Esteem patients will be getting their Esteem through surgeons instead of Envoy Medical. Envoy will no longer be sending their engineers to remote areas for their Esteem adjustments.  The future goal is to have Esteem trained audiologists in many different areas throughout the US  so that it will be more convenient for patients; however, I was told that it would take a while (at least a couple of months) to reach this goal. I was also told that at the present time, while the new procedures are put in place, current Esteem patients will have to travel to their implanting surgeon site or surgery center  for their adjustments. 

The changes that Envoy is undergoing makes perfect sense to me. These changes will make connecting with the Esteem implant much easier and less tedious for patients since we can connect with a surgeon directly instead of having to go through Envoy to ask questions, determine our eligibility, and make payments. Additionally,  I can only imagine the resources that will be saved by not having Esteem Engineers fly across the globe to make adjustments. Hopefully, these resources can and will be used for research/credibility and making the Esteem device more effective, especially for those with profound hearing loss.

While I agree with the changes that Envoy is making, I have to admit that I am a bit concerned about what this means, financially, for my future revision surgery(ies). I was told that it has not been clearly defined yet how to handle patients that are experiencing issues with their Esteem device.  All patients that are currently experiencing an issue will be reviewed by the Envoy management team and engineers as well as my new surgeon, Dr. Murray. It is then up to Dr. Murray to decide how to move forward with my Esteem device issues. Payment for the revision procedure and expenses have also not yet been defined. 

What scares me is that it is possible that under this new business structure, my revision surgery and the expenses that go along with it (hotel, car rental, etc.) will not be cover by Envoy under their new structure. I have been through the process once and it is definitely NOT cheap! I just keep thinking to myself, how on earth am I going to be able to afford the costs of a revision surgery? The issues with my Esteem are outside of my control and there is nothing I could have done to prevent this disconnect of the driver from the Stapes.  I have also done so much extra work, specifically around aural rehabilitation, to make sure that I am, personally, doing everything I can to get the most from the Esteem. I know I took a huge leap of faith going into this surgery and I feel like a 2 year old saying this (so, excuse my pity party moment), but it just does not seem fair. Ugh. I feel upset. angry. frustrated. impatient. confused. I feel so many emotions, I do not even know what I feel (if that makes any sense at all). 

I think the worst thing for me right now is just not knowing what the financial aspects of the revision surgery will look like and not being able to see a clear picture of my future with the Esteem. I love the Esteem and it has changed my life in more ways than I could have imagined. I love it! However, it is hard knowing that it has the potential to get even better and that one day, I may not have to consider myself as hearing impaired anymore. There is one thing that I hate more than waiting and that is things that are outside of my reach. If Envoy does not cover my revision expenses, then this dream is out of reach for me. But I am a fighter and this is just another uphill battle that I will have to overcome. I may not see the benefit of Gods path for me now, but I know that one day, I will look back at these struggles and thank God for giving them to me. I will never let these hard times define me or my life but instead strengthen me to my core and give me the gift of patience. 

Phone Consultation with Dr. Murray

I cannot believe it has already been almost two months since my last blog (and since I found out that I will need a revision surgery). I have been trying to schedule a phone consultation with Dr. Murray for about a month now, but since he is so busy, his phone consultations are currently booked out a month or two in advance! It’s crazy! I think I had an angel watching over me because, out of the blue, I received a call from Rebecca, Dr. Murray’s assistant, early Monday morning to let me know there had been a cancellation and that Dr. Murray would be available to speak with me later that afternoon.  What a wonderful surprise! Normally, I have a bit more time to prepare before my doctors appointments, but I was, fortunately, able to populate an exhaustive list of questions and was even able to send them to Dr. Murray before we spoke on the phone. Unfortunately, our phone call was limited to 30 minutes, so there was not enough time to get to all of my questions; however, I feel that all of my immediate concerns were addressed.

Dr. Murray was running a little bit behind schedule so he called me about 30 minutes after our scheduled time. I swear those 30 minutes could not have gone by slower, but I have to say that it was well worth the wait. Dr. Murray had been my top choice when researching for my initial surgery, but I opted to have the surgery with Dr. Marzo, in Chicago since this location was close to my hometown, St. Louis, Missouri. I love my husband and he is an exceptional caretaker but sometimes, only momma can make you feel better.  Not only are his credential outstanding, but I have also had the privilege to speak with his former and current Esteem patients, who have had so many wonderful things to say about him.  My conversation with Dr. Murray truly exceeded my expectations. Finding a surgeon that is both knowledgeable and personable is difficult to come by these. I think what I was most imporessed with was his honesty and I got the sense that he really seemed to care about his patients and their success with the Esteem.

After our brief introduction and "hello", we started making our way through the list of question.

Melinda mentioned that my driver was not connected properly to my stapes. How does this typically become unconnected? Should I expect this to happen again?

Dr. Murray's initial response was not very direct. He essentially said that while it does happen too some patients, he is unsure of the definite cause. Of course that was not good enough for me! So after some additional probing, he mentioned that he did have some theories about why this may be occurring, most of which seem to occur due to “technical issues” during initial surgery.  Thinking back on this, I am not exactly sure what he meant by “technical issues”, but I am sure that if it has anything to do with surgical procedures, the concept would be far beyond the grasp of a laymen. He did, however, mention that we are less susceptible to these “technical issues” during the revision surgery, which means that there is a greater likelihood of making the proper connection between the device and our ear bone during the revision surgery compared to in the original surgery. This was great news to me! I also had some concerns that maybe this disconnect was caused by something I did, such as strenuous activity or even touching the surgery area too much. Dr. Murray assured me that this possibility was highly unlikely. 

What should I expect when I come to San Jose for my surgery? What exactly is done during this surgery?

When I come in for my pre-op appointment the day before surgery, he will take a look at my ear through a microscope in order to officially determine the issue as well as the type of surgery that will be required to fix it.  If it seems reasonable that the driver is not well connected to the Stapes, he will run some special test, that have actually not yet been created to date. Envoy is currently in the process of developing state of the art tests that should more quickly and readily identify connection issues between the Esteem and the middle ear. He expects that these test will be available sometime before October (my scheduled surgery date); however, it is difficult to tell at this point in the process.

In preparation for my surgery, I will need to be open to a couple of plans.  The worst case scenario would be having a full revision surgery in which they remove, replace, and reconnect the driver. This procedure requires that I am put under anesthesia, but it does not take nearly as long as the initial surgery. However, there is very much the possibility of scar tissue as well. Scar tissue is fairly common and is caused from the initial surgery (and any subsequent surgeries you undergo).  The more surgeries you have, the more potential for scar tissue to build. Scar tissue tends to form around the device, but it can also connect to the ear drum and ear bones, which both play a critical role in how sound is transmitted and received, thereby affecting the clarity of sound. This is part of the reason that people with scar tissue often have issues with feedback. When scar tissue builds up, it inhibits the engineer’s ability to effectively program the device. Luckily, this issue can almost always be fixed by simply working directly through the ear canal. During this procedure, a laser is used to remove the excess scar tissue and only requires local anesthesia.

Up into this point in our conversation, he was planning to do conduct the revision surgery for me. However, when I asked the next question, the direction of our conversation took  a complete 180 degree turn.

I have heard that there have been some issues with the adhesiveness of the cement used during surgery. What is this issue, exactly? Is it advisable for me to proceed with the revision surgery knowing that this issue has not yet been resolved?

In recent months, they have been able to identify that the cement being used is part of what is causing the lack of success in some patients, like myself. While he did not seem to know what the exact cause of the issue is, he did say that they were working to get to the bottom of it. 

During our discussion of this topic, he asked about the quality of my life and the benefits I have received from the Esteem. He was essentially trying to determine if this surgery was something that I needed right away or if I was getting enough gain that the revision surgery could wait. If I chose to push back the surgery to a later date, he would be able to provide me more clarity on the issue.  Without having the full inside story into the root of the problem, he expressed a bit of uncertainty in moving forward with my revision surgery in October. While I would see some improvement from a revision surgery now, it would essentially be a 50-50 gamble at this point (he actually made some poker analogy that I didn’t quite follow so I am close to positive that this is what he was saying).

So, while he does not currently have any scientific reason to recommend that I postpone my surgery, his intuition is telling him that I should hold off until they have had more time to investigate the root of the issue and develop new protocols on how to proceed with fixing the issue. If they were to operate in October before the cement issue has been resolved, I got the sense that it may actually make things worse in the long run, for example, additional surgeries lead to more scar tissue build up (which is related to feedback and clarity issues and difficulty in tuning the device). As my husband said, “It would be like using duck tape to hold parts together, instead of actual replacing the problematic part". Surgery for me right now would be just a quick fix, but would not actually correct the issue completely. He mention that he would move forward with the surgery in October if I felt that I had not gained much from the Esteem.

In short, since I have progressed and obtain some improvement with the Esteem, he is essentially suggesting that I wait until the cement issue is fixed so when I do get the revision surgery, he can be sure that I will get the full gain and accuracy that the device has to offer. When you have your doctor essentially tell you, “if it was me, I would wait”, I think this is very sound advice. While I appreciate his honest opinion and the fact he has my best interest at heart, it REALLY sucks that I have to wait even longer for this issue to be resolved. It also sort of worries me as well as Dr. Murray said that if there truly is an issue with how my driver is connected, then the connection, as well as my hearing, will get worse over time.

You can probably guess what my next question was:

How much longer until this issue is resolved?

He estimated that it would take about 6 months to a year for this issue to be resolved. I got the impression that Dr. Murray will be the lead investigator in resolving this issue, which makes me very confident in his recommendations to withhold from surgery at this time. I am 28 years old, which, to him, is still young, so he said if we take our time and are patient, the better my results will be in the end and the more time I will have to enjoy all the has to Esteem offer!

Our game plan now is to hold off on the revision surgery for 6 months. I will speak with Dr. Murray again in early January to discuss the progress towards resolving the issue and what make sense in terms of moving forward. He mentioned that, even if the issue is figured out 6 months down the road, we may still want to wait an additional 6 months to make sure that the issue is 100% corrected and proven to be effective in other patients. The initial surgery and the revision surgery are almost two different things. While there are protocols in place for how to conduct the initial surgery, Envoy is just getting started identifying issues and the most efficient surgical method to deal with those issues. Since this is state of the art technology, how to deal with the problems are not well known as it takes almost a year for them to determine if a method is a true success or a failure.

I hate to sound so selfish but it really sucks to know that there is something wrong with my ear, but that I have to wait 6 month to a year to fix this issue. While I am confident in my decision to hold off on surgery, it is going to be very difficult for me to be patient during this time.  But I guess all I can do right now is hold tight and know that when the time is right, my miracle will come true.