Changes Ahead!

Envoy has changed their business model. That is what all the fuss and anxiety was about. The CEO has been replaced, and many staff/customer service reps have been let go. I have 2 familiar contacts left with Envoy, so that is a comfort somewhat.
Envoy has decided to cut back out of the picture and let the implanting surgeons take the lead on recruiting appropriate candidates for the device. They will no longer sell the device to the consumer, nor place a consumer with a doctor. It is up to any new patient/consumer to find the doctor and have the doctor decide if the Esteem will work for them. The docs are loving this part. I agree that it makes so much more sense to go through the surgeon vs going through a medical device manufacturer for important medical questions/advice and doctor match up.

One thing Envoy has done to cause a bit of a stir is to follow their LOU (letter of understanding) that all patients signed, to a T. That means only the activation and one adjustment are included in the purchase agreement of the device. All else (further adjustments, revisions, etc) will be the responsibility of the patient now, which had not been the case before. There were many of us (including me) who were promised much more than what the LOU stated. Some promises were in writing, most verbal. While Envoy has remained elusive about these promises, stating they cannot be upheld, they have come through for me one last time before I believe I will be responsible for everything else.
They have agreed to let Dr. S do my revision at their expense! It is a transcanal procedure which involves peeling back the eardrum and scrapping scar tissue and bone dust out of the ear and doing a little exploratory work. I'm told to expect about 2 hrs under general anesthesia and approximately 6-8 weeks with the device turned off to allow for healing/fluid drainage. He will not have to cut the original incision behind my ear on my head, which means no hair will be shaved! I'm so thankful that Envoy has decided to help me out and I'm also very happy to be able to stay with my implanting surgeon.

Next step is scheduling surgery, which should be right around Thanksgiving d/t other unavoidable circumstances...I'll be spending the holidays in quiet observance!

Pay Off!

We paid off the Esteem in full today and boy does that feel great! Just shy of one year by a couple weeks too!
I am waiting on Michelle to get back to me regarding what the revision review board thinks of my situation. Dr. Seidman is aware of the wait as well. I also quit taking the Flonase because it wasn't working, and it actually gave me intolerable side effects (pharyngitis, abdominal pain, nausea, and diarrhea).
So we wait.

I have had to turn my implant down to level 2 on program C. Everything sounds sharp and whistle-y now. Like I'm in a tin box. I can't stand to be in crowded noisey places at all. Program B causes feedback and I don't like program A anymore (was the original setting). All the programs cause feedback above level 3 anyway. It's kind of discouraging and really makes me anxious that I'm turning the implant down further and further.

There is also a ton of activity on the Facebook Esteem page regarding the changes going on within Envoy. We are all getting bits and pieces of the story but no one really knows what's going on. It's a mystery that I wish the company would explain! Until I know the full extent of what's happening, I don't want to say too much.

Revision

The appointment with Dr. S went well in terms of him getting to the bottom of why my ear just doesn't seem "right". The probable outcome is not what I expected, but it is what I want if it means getting the full potential out of my ear.
He took a look into my ear with his microscope and also did a tympanogram of his own. The tymp was normal, meaning there is not fluid in my ear. He also noticed a dry ear while looking with his scope. What he did see was bone cement on the inside of the ear drum and adhesions, both of which are likely restricting my ear's full potential to hear.
The answer? A revision of some sort. Putting me under general anesthesia and peeling back the ear drum, scraping it clean and removing the adhesions during the exploration of the ear. Dr. S said if he can do it he'd like to. Envoy typically won't allow a surgeon to do a revision unless they have at least 25 Esteems implanted. He's around 15. I don't really know what this means for me. I'd like him to do the surgery also, but will do whatever Envoy says since they pay for a revision.
For now, I've been prescribed Flonase (steroid nasal decongestant) to see if that will help alleviate any of the fullness in my ear. I'm supposed to get in touch with Dr. S in about 6 weeks to let him know how the Flonase is working, then go from there with plans to do or not do the revision.

Honestly, I'm just glad that I have a legit reason to not be hearing well and why my hearing has been sounding distorted! I'm still having trouble increasing my volume from C 3. I try to go to 4 and louder, higher pitched noises just sound whistley, like it's on the verge of feedback. But, definately still a big improvement since the last adjustment!

It sounds like the revision rate is getting somewhere up around the 5% mark now. I wonder if this will make Envoy think of different ways to do the approach to the surgery? Or if those that are getting revisions have some common denominator that makes the revisions necessary?

Uh-oh Tympanogram

I saw my own audi last week to pick up my HA, and out of curiosity I asked her to check a tymp on my right ear as it has felt full or like it has pressure in it since my Esteem was put in. She did and the results were abnormal. So I shot off an email complete with the image of the tymp to Dr. S and sure enough, I have to go see him this Thursday. The theory is that it's probably fluid, but as he said "tymps aren't always correct". Fingers crossed it's something simple!

Vacation Treat!

I went to New York City last week for vacation, and to see my best friends' new apartment. The city was fun as always but the best part of the week was going to the Jersey Shore and playing in the Atlantic all day!! It was just the best thing to be able to hear while in the water! This was my first time swimming with the Esteem and let's just say that this experience has totally made up for any of the down falls I have with the device.
I was thrown around and pulled under water by the waves and it felt like water was plugging my ears, especially the left, so much so that I thought it was blocking sound altogether. Then I realized that it wasn't water making me feel like I couldn't hear, it was the fact that the implanted ear was hearing so well!! I was amazed by that. Truly a blessing! I kept telling my hubby and friends how cool it was to be able to hear and know what was being said. Now I can't wait to go tubing and kayaking!! Those activities were always soooo frustrating trying to hear others talking as I floated away from them.
The only downside from being in the water is I do think I got water in my ear somehow. Everytime I blow my nose there is really painful pressure and then a popping in my Esteem ear. Not really sure what to make of it.

Dr. S has been in contact with me regarding the issues I brought up to Paul at my adjustment. I should get more answers in the next couple of weeks.

Cautiously Optimistic

My 2nd adjustment was a great experience. I met with Paul, one of the engineers who actually created the Esteem and he was fantastic. He seemed really invested in how well things should be working and wanting to get me going in the right direction. Not only was he very helpful with the adjustment, but he took a lot of my concerns/complaints seriously and will be contacting Dr. S himself and letting me know if anything needs to be taken care of!
One thing I really appreciated with this adjustment was that Paul used music to coincide with fine tuning my newest programs. I told him that my voice and the radio were terrible. Especially higher pitched tones. He found a Katy Perry song (only artist I could think of split second when explaining who made me wince when they sing high pitched and loud) and we worked with that until we were both satisfied the new B and C programs were acceptable. I can totally tolerate my voice now. It doesn't sound like it's booming in my head. However, internal noises are still really loud.
Radio music is also enjoyable again. The exciting thing is that I'm on levels 3-4 in program C and feeling great about it! I also think B will be nice (again a background setting) and Paul took out treble and base to help with extra noise as I was telling him that I have a hard time at restaurants, church, outside by busy roads, etc competing with hearing the voices of those around me. I have yet to really play around in B. We left A alone as this was the setting I was used to and could fall back on if B and C don't work out.
As for the concerns that will be taken to Dr. S, it is about the itching and warmth around the implant, not being able to wear sunglasses d/t the frames hurting my head where the implant is, fluid and pressure in my ear (I felt a pulsing or throbbing sensation in my eardrum with program changes which is new), starting to get right sided migraines and wondered if it's coincidental to the implant. If any of this concerns Dr. S then someone will be getting ahold of me.

I have noticed clearer sound and no distortion of higher pitched noises like before. This is a huge relief. I was also told that I test very well and the trend continues on. However, Paul was more realistic to say that even with good scores it doesn't neccessarily mean a person is getting the best sound. I truly appreciate his work and level of understanding. Right now things are sounding good.

At work the day after the adjustment, I was able to lower the volume significantly on my work phone. The iPhone is still a little touch and go. Just depends on the person talking.

I don't want to get too excited yet, but this is definately a promising change!

Preparing For My 2nd Esteem Adjustment

Things I'm going to bring up during my adjustment:

- still can't get past A2, and don't really care for programs B or C

- still have tinnitus in both ears

- right ear feels full/plugged and like I need to pop it all the time

- right ear often gets feeling/sound of fluid in it

- skin around processor still really itchy

- whenever in crowded, noisy places or near traffic, my ear wants to focus on background noise, not people near me

- high pitched voices and tones (esp on radio) sound really distorted and get almost scratchy sounding (static?)

- my own voice can be too loud or booming, esp going to level 3 or higher

- sometimes it feels as though the hearing aided side is more clarified but not necessarily clearer

- still able to pick up more sounds and tones with right ear

- feel like ear has either completely plateaued or maybe even regressed some

This isn't my complete list, but the high points I want to touch on next week. Praying I get some good answers!