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:
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.
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