Right middle ear implant for sensorineural hearing loss with the Envoy Esteem



Sunday, June 3, 2012

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!

Thursday, May 10, 2012

The Esteem and Having Surgery

I had my hardware removal several weeks ago and things went very smoothly. Not a hitch in anything. I told my surgeon in advance that I would need to have bipolar cautery and he was very accomodating. I instructed the nurses on my remote and how to work it but they ended up just having me use the remote myself when I woke up more. It all worked out fine. The Esteem still works great!
Doing the CT scan afterwards was no big deal either. And on the subject of imaging, my Envoy rep has been in contact with me recently and has given me exciting news...The FDA of Europe has allowed those with the Esteem to have MRIs! Which means the US won't be too far behind. This is such good news!
I have my second adjustment scheduled in June. I'm looking forward to that. I'm hoping to get things tweaked and sounding better for a trip to NYC just a week after the adjustment. I'm still stuck on A2, and as far as I'm concerned, I'm not ok with that. I want more. I want better. My ear feels so full or plugged all the time and I'd love to be able to be in a crowded room and not have the background noise be all my ear tunes in to.

Tuesday, March 20, 2012

Remote "Mishap"

I haven't been completely impressed with my implant since my adjustment was done and I just learned the reason why. On the way home from my mother-in-laws house over the weekend, I decided to use my background setting while in the Jeep because the windows were down (absolutely gorgeous weather!) and I was having trouble hearing over the wind and road noise. I got my remote out (this would be the second, maybe third time using it since the adjustment and the first time using it in about 5 or 6 weeks). The remote turned on, I started to query the implant and the remote went dead. Ok, I'd wait til I got home to replace the batteries and query again. When I did finally change the batteries and queried, I saw settings 1-15 for levels A, B, and C! I was confused to say the least. Though things initially sounded better on these levels, I did email my engineer Michelle about why I suddenly have 1-15. She explained that she only gives people 1-15 that seem as though they're doing well with adjustments. Anyway, after questioning this on my Facebook support group, I found out that querying after EVERY time batteries are changed is what I should be doing. So I queried again and that did reset my program back to correct settings. I still can't get past A2. Forget C. B is alright but not very useful for conversation. This remote business is frustrating.

Saturday, February 25, 2012

6 Month Mark

I am at the half year mark for my post op period with my Esteem! I think things are relatively on track for healing and I know there's lots more healing still to come in the next 6 months. I'm only slightly discouraged that my hearing seems to have truly plateaued. I'm still only able to use A 2. Even going up to A 3 is just too much for me. My own voice is the worst, then female singers (radio, TV, iPod...). My voice on A 3 or higher sounds distorted. But in a weird way. It's very clear sounding but yet almost like it could be coming from a blown speaker inside my head, which is really loud...I can't make sense of it. A 2 is good, it's getting me through slightly better than my hearing aid, but I want more power. Singers (higher pitched females, or any higher pitched sounds) just sound too tinny/sharp.
I have definately suffered through sinus fluid and drainage this year, so I'm sure that can't be helping things much. This is definately a trial and error process! At this point in time, I really can't make an adjustment appointment fit into my schedule. The soonest I can see myself being able to set one up is in June, when I will be at a post op hip appointment that is also in Detroit. And who knows, maybe things will be much improved by then?
- Still pretty itchy around the incision/processor
- Taste ability is about 90%
- Still some residual numbness at the top of my ear and my scalp
- I have not turned my device off at all since December (even with blow drying my hair)
- I haven't experienced any feedback at all since activated
- I'm still learning to associate correct sounds to certain words. So in a way, the conversations on TV don't always make sense, I still can't figure out lyrics to songs on the radio, and for whatever reason, certain people just have voice registers that I have to really concentrate on to make sense of what they are saying. I have had a few encounters still of the repeated "What?" when asked something and usually the question asked is a very simple one. For example: "Where did you work before here?" I could hear the man plain as day, but I just could not understand what he was saying. The third time he repeated himself (and bless him, he didn't raise his voice or speak irritatingly slow) I finally realized what he was asking me. It truly felt like I was hearing a foreign language, which is very common for hard of hearing people. I hope this will eventually stop happening.

My MRI dilemma was solved. I am not allowed to have MRIs at this time (much to the chagrin of my orthopedic surgeon). I contacted both my Envoy rep and Dr. Seidman about this and both have said the risks outweigh the benefits. On Envoys end, the FDA still hasn't approved MRIs yet, so they can't endorse doing it. Until then, I am allowed CT scans and ultra sounds. Also, my upcoming hip hardware removal is a month from now, and I will post on how that goes in regards to the Esteem. I was advised to turn the Esteem off during the surgery to be on the safe side (bipolar cautery is safe with the Esteem, but just to be sure, they recommend the device be powered off during any surgical procedure). Then when I recover I will be taken to the imaging department for the CT scan.
I have to admit, I'm a little nervous handing off my remote to the OR team while I'm under anesthesia as the darn thing costs $500 to replace if broken or lost! I would normally leave my hearing aids with my husband and then put them back in when he was allowed to see me after the recovery phase, but since I'll have my hearing aid out in my left ear and the right ear will be completely deaf when I wake up, I'd like to be able to turn the Esteem on right away in the recovery room to make communicating with my nurse easier. Hopefully I'll be coherent enough to work the remote!

Monday, February 13, 2012

Checking In

Time for a quick update I suppose! It's now been 5 weeks since my adjustment. In the grand scheme of things, it's going fine. Not impressive, really no better than when I had my hearing aid, but the convenience is still hands down 100% worth it. I have only used my A profile, and stay at level 2. Anything else is too "sharp" or grating on my ear. Blah, blah, blah, nothing new from last time. I don't want to sound discouraging, so I'll leave it at that. I can hear better so I really can't complain much. I just need to find time to schedule another adjustment.

I haven't discovered any new sounds lately. My incision seems like it's slowly and finally starting to heal and close up. It spit out a big chunk of sutures a couple nights ago, and although tender, no more wide scab! And my tongue/taste issue is definately improving! The 24th of this month I will be 6 months post op and that seems to be right in line with how long it was supposed to take for my taste to come back. I would say it's 85-90% better right now. And my feeling in my ear (top of my lobe/cartilage) and scalp is getting better too. I can just about wiggle my ear again:)
The hair is still taking awhile to fully fill in. It grew in really wiry and choppy. My hair dresser had to cut the ends off twice just to get it to grow healthy and correct. I cut my hair to chin length just to help that section grow in faster. It was hard to do since I did have hair past my shoulders. Oh well, the style is cute! Fresh new look;)

I can say I'm used to hearing 24/7 out of my right ear now. Although I am still in awe that it's working as well as it is, the novelty has worn off. But I'm still one proud chick when someone asks about it or wants advice/info. It's life altering. I can't stress that enough!

Saturday, January 28, 2012

Life After The Adjustment

It's been just about 3 weeks since my first adjustment and I thought I'd update a little. I don't like any of my settings. I don't find B or C useful at all, and I've tried them in just about every setting. I like A well enough but can only tolerate A 2. Anything higher and sound is too sharp or scratchy sounding. I think I'll definately need another adjustment. I think I could get by with A 2 but I want more since I know it's there.
Getting the right sound adjusted is frustrating. I always disliked having to get used to the way a new pair of HA's sounded because every pair is different with tone and quality. The Esteem adjustment is a lot like that.
I had to leave a restaurant earlier than I wanted to the other night because a Red Wings game was on and the bar tender turned it way up. No matter what setting I put my Esteem on it felt like it was blasting in my ear. I ended up plugging my ear for a little bit before finally giving up. But then two nights later, at a different restaurant, I was able to follow conversation very easily within a large group of people I was eating with and there was a large group (very noisy) at the table next to us! No game on a TV though. One of my dinner mates has a very heavy Indian accent too, and I was able to articulate everything being spoken even with my Esteem side facing away from him! And the person next to me kept having to ask ME what was being said! That was a first;) So things are progressing and improving too.

I also seem to notice hearing on the phone is not always linear and easy since the adjustment. I'm constantly playing with the volume of the phone I'm on, whereas before I didn't need to. Sometimes voices are too loud and therefore sound a little muffled and other times I think it sounds too quiet like I'm hearing out of my HA side. Oh well! That's what adjustments are for!
I'm still loving the Esteem. I know it's a work in progress and it will be exactly what I want it to be with more tweaking:)

*On a side note, I'm currently trying to get approved for an MRI for my hip (if you're interested in why, you can read about it here
I contacted an Envoy rep and he checked into it for me and on Envoys end they are still dealing with the FDA trial/approval. So Envoy can't allow me to get the MRI. Next step is to see if Dr. Seidman will say it is medically necessary and give my ortho surgeon the thumbs up. I'll post what the results are either way. I'm curious to see if the Esteem can withstand MRI but I definately don't want to be the guinea pig!

Tuesday, January 10, 2012

First Adjustment

It was another exciting day involving my right implanted ear! I met not one, but two fellow Esteem patients. Loreen and Lisa were both activated today and Loreen sat with me through my adjustment so she could get a feel for her adjustment. We found out we have nearly identicle hearing loss and Esteem programs, so it was good for Loreen to see what to expect.

One really positive thing to write about is my incision. Dr. Seidman looked at it and says it's looking great and nothing to worry about. More than likely it's a suture working it's way out. So I'm not going to stress over this too much more.

So, on to the adjustment itself. Michelle (the Envoy engineer) was there again today and was her wonderful self! She really took her time with me to make sure I got the best programming possible for now. Although I didn't really receive any "gain" in strength of sound today (I'm told that will come as I continue to heal and have another adjustment) I can say the quality of my new programs is definately an improvement!
My voice sounds less plugged and doesn't feel/sound like it's booming inside my head now. Other's voices are also clearer. Michelle was able to eliminate most of the sharp/distorted sounds from the end of a lot of words when spoken, especially higher pitched sounds. But I notice some distortion still with music and high pitched voices. It's really noticable in my new C setting, which is for music and TV watching. I don't think I'll be using this setting much. I tried it while driving home and the radio still sounded fuzzy on high tones. The B setting is for noisy settings, and eliminates most background noise yet still allows enough power to pick up and follow conversation with your partner. I do like this setting and I'm sure it's going to be used a fair amount. But my A setting is now my everyday setting and so far it's pretty good! My swallowing and breathing noises don't sound hardly loud at all (yay!) and eating chips (my lunch for the drive home) didn't sound like fireworks going off in my head. I don't mind hearing myself talk either (at least not yet) as my voice doesn't sound as loud and RIGHT IN MY EAR anymore. It's pretty tolerable.
Hopefully this will solve my problem with my voice being too quiet for others when I speak, especially with my husband. I was given steps 1-5 again and I'm on either A 2 or 3 right now. I'll probably bump it up tomorrow after work once I get a feel for how it sounds there.

Michelle also went over my audiogram with me from baseline to today. I gained anywhere from 10-15 decibels in the majority of the hertz tests and my hearing out of the implanted ear is at the lower range of normal now! I think that's what she meant when she was explaining it to me. I am pretty happy with that, especially knowing I may be able to improve a little more.
Another notable today....she said more and more insurances are starting to pay for the surgery, so there is hope that this will be much more attainable for others, and for myself to get the left side done. Fingers double crossed!