Gentle Reminder To Self (It's Really Not So Bad)

I realize (sheepishly) that my last few posts really aren't all that wonderful or reflective of the life I have with the Esteem. I've been pretty self-absorbed in the "poor me" aspect of it and wanted to put out there that I really am not that disadvantaged because of the complications I'm experiencing. While I muddle through the frustrating and not so fun part of the implant surgery and revision, I also want to point out the good. I still love being free. Free to shower, free to exercise, free to swim and play in the rain. Free to sleep at night and hold a quiet conversation with my husband before falling asleep. Free from constantly changing dead batteries or always buying batteries. Free to turn my ear off completely should I need to veg from the hearing world. I have so many good options!
My hearing is at least as good as, if not just a little better than aided hearing. Although I can only be on level 2 or lower, it is functional and I don't struggle terribly. I did a little experiementing too while listening to certain far away or quiet noises. Things like my cat purring, or birds chirping off in the distance, or the clock ticking. I plugged my Esteem ear to see if I could hear these noises with my hearing aided ear and I could not. So these little noises I'm picking up with the Esteem are confirming that I still have gained something, despite the fact it's not perfect. I am frustrated and joyful all at the same time. For every bad thing, there is certainly a good thing too. Just a gentle reminder to myself that the implant really is a blessing, it's just the hiccups along the way, the side effects of the surgeries, that are preventing the complete joy of the implant's full potential.

Dizzy

Not a whole lot of change. I have been notably dizzy though. Off and on since the last few months, but especially since early on in recovery from the removal of adhesions. It's vertigo like symptoms, minus the nausea and vomiting. If I lay down, the room spins. If I roll over in bed, the room spins. Sometimes just standing and looking up can cause a violent whirling around me and I have to steady myself by grabbing something. Even noticed that if I'm really tired/fatigued, certain ringtones or higher frequency noises will make me feel lightheaded. The symptoms only last several seconds thankfully, but I am starting to become concerned that it's not going away.

Hearing is still decreased
Ear still feels full
Occasional ear pain
Right sided migraines
Vertigo like symptoms
Occasional autophony
Feedback and whistley tones in programs 3 and higher

Waiting, waiting...

I saw Dr. K last Friday. He determined my ear looks healthy, but does feel based on my description of my prior symptoms that I did have an ear infection most likely. He thinks it's lingering and not quite all gone, so he put me on a 2 week, twice a day antibiotic (Augmentin) and then I will come back when it's finished to get a hearing test and follow up with him.
He's also putting me on a new steroid nasal spray, Qnasl. It's an aerosol mist instead of liquid spray. I really like it a lot better. This will hopefully continue to help with swelling in my ear and help keep the eustachian tube functioning better.

One thing he did notice is that my eardrum is retracted on my stapes. He's not sure if this is causing my issues or not. He feels my adhesions probably are coming back. At this point, if that is the case, we both agree that no further surgery should be done to my ear as I am making too much scar tissue as is. I emailed an FYI to Dr. S so he is in the loop too. Hopefully I'll have good concrete info to update with when I go back for my hearing exam.

I'm on day 4 of the antibiotic and it feels slightly less full/pressure in my ear.

Back To Square 1

Down to C2 again. Everything at 3 and higher sounds too whistley again, and at night when I lie down on the Esteem side I start to get feedback...ugh!!!!! I'm not sure at this point what to do. I guess the first step is going to be emailing Dr. S just to let him know and getting in to see Dr. K to see if there is anything wrong with the ear.

Decrease in function of Esteem
Vertigo like symptoms (room/floor seems to tilt and spin)
Ear feels really full
Some ear pain, a little achy and sharp
Ear pain when blowing my nose
Occassional headache only on my right side and right behind my eye and above ear.
Small amount of bloody discharge on my pillow a little over a week ago.

Setback

I had a bit of a setback since the last post. A few weeks ago, I started getting noticable swelling of my right cheek and also had either a really bad cold or sinusitis/ear infection. One of the doctors I work with looked at my eardrum too and she said it was really red, but no fluid that she could see. It really started to affect my hearing and I had to put the Esteem on C1 and get a z-pak antibiotic. The antibiotic helped, along with a slew of other meds like flonase, Zyrtec-D, dayquil, nyquil, and mucinex. Since then the swelling has gone away as well as the cold/infection, but I still have dizziness and the sense of fullness or fluid in my ear. I have been able to get to C3 most of the time but even that is pushing it. I'm getting a lot of the same shrill sounds that I had prior to the scar tissue removal surgery. I will admit, I'm frustrated. There doesn't seem to be a whole lot of sense in getting an adjustment yet either because the West Bloomfield audiologist is not trained to adjust, so it would be an Envoy engineer. Audiologists are better at knowing what works for hearing. I'm kind of at the mercy of Envoy for that.
I am pretty sure I also have a dysfunctional eustachian tube, which I think was the case even before I had the Esteem implanted. I'm just noticing it a lot more now that the Esteem is in. I think it stays open when it's not supposed to, and then my breathing sounds like it's in my ear and I can't stand the sound of my voice because it's also right in my ear and so loud. Swallowing or chewing gum doesn't relieve it. It just eventually goes away on it's own.
I feel so bad complaining since I am pretty fortunate overall. The convenience is still so wonderful and I am so grateful to be able to hear all the time.

I'm W-hole

I followed up with Dr. K today to check on the status of the hole in my eardrum and great news to report! The hole has completely healed, the paper patch has been removed and he said the eardrum is so clear he can see into my middle ear and identify the prothesis and stapes, etc. He said there is very minimal scarring and things couldn't look better. There is no fluid and no swelling either. I asked about the lingering achy, slightly sharp pains that I'm getting and he said based on how the eardrum looks (which is great) it's likely still healing. It has only been 5.5 weeks so that makes sense, and the pain really isn't pain, it's very manageable and I don't need to take anything for it.
I'm still hearing very well but have been slacking on really listening and being aware of my surroundings when people are talking, because a few times I've been caught "daydreaming" and asking "what?" a lot again. Old habits are hard to break...
The only negatives, if I can call them that, are that I'm getting significant feedback when I blow my nose everytime and some of my own internal noises are slightly shrill sometimes. But, being that these were noticed a couple weeks ago and nothing else has come up, I'm feeling pretty confident that this is the worst of it!

My next plan of action now is to set up an adjustment in West Bloomfield and get adjusted properly for what my ear is able to hear now, without the scar tissue impeding it. I think insurance would cover the audiologist visit at HFWB hospital, so I'm hoping that all I'd have to pay is the $40 copay and use my "one" visit they granted me to follow up with Dr. S as well.

As of now, this is what I use for settings since the removal of adhesions:
Daytime/everyday settings - C4
Sleeping/showering - C2

I am still in a learning curve and don't recognize a lot of sounds I hear now, but the important thing is, I'm hearing them! It's up to me to learn what I'm hearing and to learn to pay attention to my surroundings now. I've "tuned out" for 30 years and now I need to retrain my brain to tune in. Luckily, it won't take a lot of effort since the Esteem has taken the work out of hearing. It feels good to be w-hole :)

One Month Post Scar Tissue Removal

Merry Christmas all, and Happy New Year! Today I'm one month post op and things are still going relatively well. My ear still feels a bit congested, and still has the sound and feeling of fluid in the ear.
Whenever I sleep on the Esteem side it feels like my ear fills up with fluid and when I lift my head there is a feeling of suction or inward pressure and a pop that releases the pressure and then a second "normal" pop. I asked Dr. S about this and he thinks it sounds like the eardrum is healing, so alright! I'll take that!
I have noticed a slight shrill sound associated with myself, my internal noises, and louder high pitched noises again, which I'm guessing is scar tissue forming. I hope that it isn't going to get worse than this. I go about on C4 for my daily routine and turn it down to C2 at bedtime, and this seems to work well. I like C5, but the sounds that I notice are shrill are magnified so much at this level that it just isn't enjoyable to stay on.
I blew my nose gently for the first time this past week and had major feedback. That sounded awful! I'm also still showering with a cotton ball covered in vaseline in my ear until I see Dr. K again (Jan. 9th) to determine if the hole has healed in my eardrum.
One good thing to note is that my PCP requested that my insurance pay for me to have a covered visit with Dr. S and they agreed for ONE visit approved through mid March, and then from there they would need to be notified again if I needed to be seen by Dr. S to decide if they'll pay for more visits. I'm crossing my fingers that this will open the door to them paying for the Esteem on my left ear eventually.
I still have several more weeks of healing left to do and potentially my hearing could go one of 3 ways; worse, status quo, or better. I'll be very happy with status quo or better! God has blessed me with a very caring and talented surgeon who has stayed with me every step of the way and much better hearing than I could have dreamed.