Some Potentially Exciting News

I just found out today that my employers will be switching health insurance providers and that as of March I will be covered by United Healthcare. This may not seem like a big deal to many BUT this provider has covered the Esteem surgery for some patients in some states! Which means, that there is a possibility that I could have my other ear implanted without having to be $45,000 in debt.

Although this surgery is a huge risk and I have had some hiccups along the way, I would not think twice before having my other ear implanted. Before, cost had been a concern, but if it is possible that insurance would cover this, it would be such a miracle!! Even if my hearing is just as good as it would be with hearing aids, not having to deal with hearing aids on a daily basis is what makes the whole process so incredibly worth it.

I love being able to have conversations with my husband in the dark, with the lights off, in the middle of the night when neither of us can sleep; I love being able to hear and feel safe at night, when I am driving, when I am swimming; I love the thought of being able to jump into a pool or the ocean without worrying that my hearing aid would get ruined; I love being able to hear while I am showering.

I am just beyond excited at this moment and pray that this will all work out!

Revision Surgery Agenda

Monday, January 21^st

7:45 AM        Lydia Departs from New York

American Airlines

Flight # 59

Depart NEW YORK (JFK) at 7:45 AM

Arrive in SAN FRANCISCO (SFO) at 11:25 AM

11:25 AM      Lydia Arrives in San Francisco

American Airlines

Flight # 59

Depart NEW YORK (JFK) at 7:45 AM

Arrive in SAN FRANCISCO (SFO) at 11:25 AM

11:50 AM      Alex and Fraser Depart from Denver

Southwest Airlines

Flight # 1030

Depart DENVER CO (DEN) at 11:50 AM

Arrive in SAN JOSE CA (SJC) at 1:35 PM

12:30 PM      Lydia Rents Car at San Francisco Airport

1:35 PM        Alex and Fraser Arrive in San Jose

Southwest Airlines

Flight # 1030

Depart DENVER CO (DEN) at 11:50 AM

Arrive in SAN JOSE CA (SJC) at 1:35 PM

2:00 PM        Lydia Picks up Alex and Fraser at the San Jose Airport

2:30 PM        Check-In Hotel

Courtyard San Jose Campbell

655 Creekside Way

Campbell, California 95008

http://www.marriott.com/hotels/travel/sjccc-courtyard-san-jose-campbell/

3:00 PM        Audiogram with Dr. Tucker

6060 Hellyer Avenue #150

San Jose, CA 95138

4:00 PM        Pre-Opt Appointment with Dr. Murray

6060 Hellyer Avenue #150

San Jose, CA 95138

Tuesday, January 22^nd

11:00 AM      Arrive at Surgery Center

Silicon Valley Surgery Center

14601 South Bascom Ave. Ste 100

Los Gatos, CA 95032

12:30 PM      Surgery Scheduled to Begin

5:00 PM        Surgery Ends/Head to Recovery

9:00 PM        Head back to Hotel

Wednesday, January 23^rd

2:45 PM        Post-Op Appointment with Dr. Murray

Thursday, January 24^th

11:00 AM        Hearing Aid Adjustment with Dr. Tucker

Friday, January 25^th

10:00 AM      Check out of Hotel

12:40 PM      Lydia Departs from San Francisco

American Airlines

Flight # 16

Depart NEW YORK (JFK) at 12:40 PM

Arrive in SAN FRANCISCO (SFO) at 9:15 PM

1:10 PM        Alex and Fraser Depart from San Jose

                        Southwest Airlines

Flight # 519

Depart SAN JOSE CA (SJC) at 1:10 PM

Arrive in DENVER CO (DEN) at 4:40 PM

4:10 PM        Jane and David Arrive in Denver

                        Southwest Airlines

                        Flight # 818

                        Depart ST LOUIS MO (STL) at 2:45 PM

                        Arrive in DENVER CO (DEN) at 4:10 PM

4:40 PM        Alex and Fraser Arrive in Denver

A Revision Surgery is in My Future

Today was my appointment with Melinda, the lead engineer at Envoy. I have been beyond nervous and anxious since I made this appointment two weeks ago. While I was so excited to finally know what was going on inside my ear and start to get answers to my many unanswered questions, I have also been a nervous wreck to find out what those answers would be. Or better yet, that there would be no answers. That I made a huge mistake by taking this leap of faith, and that the Esteem would never work for me. 

My poor husband who has had to tolerate my emotional and somewhat snappy attitude the last 2 weeks. I have been a bit on edge and cannot say that I have been the most pleasant person to be around. When I got home from work yesterday, I, naturally, picked a fight with him. I mean, what else is a girl to do when she comes home from work and finds her husband waiting outside on the front porch playfully grinning at you as your car pulls in the driveway. Work has been beyond busy and having this appointment hanging over my head as I struggle hearing my way through life has been emotionally straining to say the least.  Why is it that we push people away when we truly need them the most?

After my husband retreated to his man cave in the basement, to save himself from my less than pleasant attitude (he knows better than to mess with me when I am feeling this wound up), I collapsed in bed, took my first deep breath in almost 2 weeks, and actually screamed. Not like ha-ha I screamed, but horror movie scream. You may think I am crazy but I have to say that it was very liberating. My world collapsed around me and for those 5 very long seconds nothing in the world mattered. I realized that I had hit my breaking point and that the only possible thing that could help me was a, much needed, rejuvenating sleep.

When I woke up this morning, I felt like a weight had been lifted off my shoulders because I knew that no matter what the outcome of my appointment was today, that there was nothing I could do to change the past or what the future will be. Letting go of things that cannot be controlled is a very difficult thing to do, but it can be so freeing when you do. I was in good spirits when I got to my appointment with Melinda and she was just as wonderful as everyone said that she would be. She had a great positive energy about her, she really knew her stuff, and answered every last question that I had, even with another patient waiting for her appointment to start.

My appointment consisted of doing lots and lots of tests. They did both standard hearing test as well as tests on the device to make sure that each of the Esteem components were working properly. After conducting these tests, she found that while the Esteem components (sensor, sound processor, and driver) were working just fine, it seemed that the driver was not connected properly to my Stapes (one of the three middle ear bones that are used with the Esteem). 

I pulled this picture and definition from the Envoy Esteem website (www.envoymedical.com) so you can understand what I am talking about.

The Driver is attached to the stapes in the middle ear.  The Driver converts the electrical signals that it has received from the Sound Processor back into mechanical vibrations and transmits these signals to the stapes and the cochlea.

The electrical signals that are being adjusted through the sound processor are sent to the driver, which stimulates the stapes and send signals to the cochlea and then off to the brain for interpretation. Essentially the input of sound is being processed correctly but there is a “bug” in output of sound, which is leaving a smaller signal to be interpreted. Melinda said that this is why the distribution of my gain on my audiogram is not consistent; not all of the signals are being processed.

While it feels great to know what exactly is going on with my ear and to finally have my questions answered, this is, unfortunately, not a painless fix. The only way to improve my outcomes with the Esteem is a revision surgery. I will have to be under anesthesia but was told that the surgery is much less invasive than the first and will not take as long since they know exactly where the issue lies.  Also, I will have to be with one ear after surgery but only for two weeks this time. I do not think I could handle another two months of hearing out of one ear as I did with the first surgery!! I was also very relieved to hear that I would not have to pay for this revision surgery, and that Envoy would also cover our travel and hotel expenses.

I decided that I would be having my revision surgery with Dr. Murray and I was told that his assistant would be contacting me Monday to schedule and review all of the details. The timing of this couldn’t be worse, since June through August are my busiest months at work, and my husband will be starting his new job in August and will be attending a very intensive training through the month of August before his job officially starts. Since he is just starting he is not going to be able to take off work right away or be very attentive when I am recovering at home. Also, my sister is expected to have her baby the first week of September so my parents will be in New York City with her before and after the baby comes. So, I am not exactly sure when it will realistically make sense for this to happen. Obviously I want to be able to do this as soon as physically possible, but I also do not want to set myself up for more than I can handle. Also, thinking back to how difficult is was for me to recover from the first surgery, there is no way I would be able to take care of myself. So, my next steps are to talk with work and also trying to find a reliable caretaker and go from there.

And my journey of learning to hear continues (or should I say starts over)...

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.