New Robot Ears!

So on Monday this week I finally got fitted for my new hearing aids, they are a pair of Phonak Nathos S+ aids with moulds to fit my ears and programmed for my hearing loss which the lady said was in the region of 100db of a loss in both ears which is huge I thought and a dis-improvement on my last tests which were far too long ago!

I have only worn them for a couple of days now and I find them excellent! The sound is powerful and natural enough sounding. They are not heavy in my ears though they feel slightly heavier than my last aids but not by much.

The moulds are silicone and softer than my last ones but a slightly tighter fit so take a little getting used to as after wearing them all day yesterday I found they hurt the ears just a tiny bit, more like got tired from wearing them all day. Once taking them out though my ears felt like normal again so its just a matter of getting used to them I think.

The hearing aids have little musical earcons when they turn on, which is pleasant to hear and when you use the volume switch they make more earcons to tell you when you have gotten to the highest or lowest level it will give you a slightly different earcon but it is all very intuitive.

The best thing about them is they are programmed to work together, so if I change the volume in one of the aids, they sync and the other aid will adjust the level to the same as the aid you have adjusted so it saves you having to change the volume on both ears.

Thats about the brunt of them I think, I was called to the consultants appointment in the University Hospital Limerick on the 6th of June where I was given an in depth hearing test and referred to the hearing aid clinic. Then within a month I got another appointment for The Hearing Aid Clinic for the 30th August for another hearing test and fitted for the moulds, then I was called back there within the month again for the 9th of October to actually pick them up, get them fitted and programmed so that was nice and quick really.

 

I had my last pair of hearing aids for over a decade! They were a pair of Oticon GB50’s analog aids and they were my daily ears for years! They were in dire need of an upgrade at this stage! The moulds and tubing had yellowed and hardened and the sound wasnt powerful enough for my hearing loss as it has gotten so much worse over the last few years so the upgrade was badly needed.

I wrote before about my hearing loss, underdeveloped Eustachian tubes and middle ear disease, which has lead to 12 operations on my ears, you can read all about that here.

I have often wondered if all this hearing loss is EDS related as I have had hearing problems all my life since I was born, much like the EDS so I have to ask if they are connected, I am only curious on this as there is no proof to say that they are linked at all. However from reading many forums and pages online it seems some hearing loss can be attributed to EDS but it is not definite only anecdotally.

Still an interesting question though.
Have YOU EDS?
Do YOU have any sort of hearing loss or ear problems?

Please let me know in the comments below, I would love to hear about this from more people, just out of curiosity!

Thank you for reading folks, back soon with more news!

Lette (The Fainting Goat!)

 

Hearing Difficulties -Possibly EDS Related?

Yup, those are my earbots!

I haven’t actually needed these for the last while. When I’m at a certain level of hearing I get used to it and end up not wearing them unless I’m having a really bad hearing day (yes, it goes up and down on occasion, which is frustrating!) but my hearing is gone really very crap again, I’m not hearing Keith when he is talking to me and I’m missing things, so these ugly boys are out again.

I have had severe bilateral hearing loss and consistent ear trouble since the age of 7.

I don’t talk about it much as it embarrasses me and I just get self conscious if I know that’s what other people are thinking about when they talk to me, plus they always want to test my lip reading, which is a nice party trick but isn’t that easy to do on the hop, as you must consider all context of the conversation, you also must be somewhat used to the person you are talking to. I find it takes me a little time to get used to talking to someone new before I am comfortable enough around them to ‘get’ what they are saying and it takes me even longer to get used to a bearded man. Everyone pronounces things and moves their mouth differently. I find a tiny bit of tone or sound helps me also as that is how I’m used to using it.

On my last hearing test, which was over 6 or 7 years ago now, showed that my left ear has only about 15% hearing remaining and my right has about 35% hearing. It certainly feels as though it’s a lot worse now!

It is called SensoryNeural Hearing Loss, caused by underdeveloped Eustachian Tubes that are dysfunctional, middle ear disease (where the 3 tiny bones in my ear behind the eardrums are wasting away) and also Adult Otitis Media.

Hearing problems also run throughout my dads side of the family anyway.

My symptoms throughout my life include:

1: Constant fluid build up in the middle ears (called glue ear in kids) causing wastage of the middle ear and mastoid bones and ‘leaky ears’, adding to the hearing loss accumulativly over the years and will probably continue to do so as I get older.

2: Reoccurring ear infections causing further fluid and damage.

3: Shooting sensations of random sharp pain in the eardrums.

4: What feels like spasming of the eardrum or close muscles.

5: I produce little or no earwax which serves to protect and moisten the ear, so my ear canals are narrow and raw with dry, flaky, very itchy inner ears.

6: and probably the most annoying – are clicking, crackling and ‘ocean’, sounds coming from deep in my ear. (Like if you put your ear to one of those seashells, I could never actually hear that!) I sometimes hear my heartbeat clicking too, especially if I lie down and also sensations of ‘breathing through my eardrums”, it’s the only way I can describe it. As I breath, I can hear and feel my breath escape through my eardrums causing sharp pain and the feeling of movement as I do so.

This, according to my ENT surgical consultant, is because my Eustachian tubes are always closed and dysfunctional. Sometimes they open up like normal people’s ears and the feeling is so alien to me because I’m simply not used to it that way!

Looking back now, I would’nt be  at all surprised if it was somehow associated with my EDS.

I have had 12 operations on my ears under general anaesthetic which have scarred my eardrums irreparably making them very thin, fragile and they rupture very easily.

I have worn hearing aids since the age of about 12. I learned to lip read from an early age to compensate for what I was missing in school etc. and I learned some Irish Sign Language in my college years (not fluently at all!)

I was diagnosed as clinically deaf at the age of 19 but it’s not like I can’t hear anything!!

I have a lot of difficulty, especially with background noise, I have dropped notes while listening to music because I can’t hear some frequencies, or in a group situation, where I’m speaking either too soft or too loud because I can’t determine my own volume! but in general, if I’m one to one with you, I’ll watch your mouth and catch a lot of what you’re saying! (Please don’t mind me if I look like I’m checking you out, I’m not, really!) :p

I have been referred back to my ENT surgical consultant now so hopefully I wont have to wait too long to see him to see what he says and what the updates are.

Apparently I hide it well, I dunno though, I ask “WHAT”? A gazillion times a day like!! :p
So, have you any hearing difficulties that may or may not be associated with EDS or your particular chronic illness?

Let us know and share your comments below. 🙂

Thanks for reading, and as always, feel free to share – Lette (Fainting Goat)