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!)

 

Holy Nerve Blocks Batman!!

Hi everyone, (all maybe 2 of you who read this humble bloggie! 😉 )  I hope you are ‘both’ keeping very well? :p

Thursday, this week, was the day to get my Sacroiliac (lower back/top of pelvis near the hips) and Occipital (Back of the skull near the very top of your neck) Nerve Blocks in Croom Orthopedic Hospital with the Good and Great Prof. Pain Specialist (as I shall refer to him!)

I really like this guy, he is friendly, thorough, very helpful and LOVES History! 😀 When he speaks with you, if he gets a thread of a piece of history he may know about in the conversation, he will pull that thread and see where it goes! He likes to talk and looks like the epitome of a Pain Specialist, Tall, Slim, White Lab Coat over a nice suit and tie or sometimes he may be in blue scrubs, and there he stands with an ultrasound probe in one hand and an intimidating looking injection in the other and usually a large grin on his face! :p

Anyway! I had found the last 3 weeks or so very bad with pain, especially at the base of my skull and the top of my neck and shoulders and as I have been given admission in Harolds Cross from the 8th of February for at least one week and perhaps more, so I needed these before going, gladly, I had the appointment already given to me since my last admission in October where I had gotten my first Occipital Nerve Blocks.

It was a really long wait, my appointment was at 12 and I didn’t get in for the injections until after 2pm! He asked me how I was doing, reviewed my pain and pain meds and went in for the kill!! These injections are sore but not impossibly so. They have anesthetic in them so there is a numbing effect which kicks in after a couple of minutes, but the injection itself will make you squirm, just a little.

I got the injections under ultrasound and while looking at my neck he said he wanted to send me for an xray and following that an MRI. I will be called for those soon but he said he wanted to check for possible instability or anything that might give away what might be going on in my neck. He said it sounds like instability of the neck to him but it cant be seen or confirmed without proper scans and tests.

He explained that the clarity and contrast between a regular xray and an MRI wouldn’t have much in the difference but that it would be a proper start to the investigation of what is going on in my neck. Depending on what shows up or what doesn’t show up on these xrays, my next trip to London may involve an upright MRI to investigate deeper for instability or other complications.

This is the pain progression from when I woke Thursday morning (First Line) during the hospital wait and injections (Second Line) to when I finally got home after the injections!

While behind me giving the injections in my sacroiliac joints he grabbed my ponytail and said,

“Perhaps getting this hair cut may help ease your discomfort? especially before starting in Harolds Cross”

When I asked if he really thought it would help he said he didn’t see why it wouldn’t at least help ease the pain, anything to cut any bit of weight off the neck is a good thing and that having to deal with hydrotherapy, pools and showers on a daily basis while in Harolds cross, would probably add more stress and strain to the neck so he thought it would be best to get it cut sooner rather than later! …so, I will! 😮

I had been planning for near months to get the mop cut anyway, its been over a year and its in dire need of a nice new doo!

My plan then for this week is to get ‘mah hurr dunn’, Relax and recover from the nerve blocks before starting in Harolds Cross. They take anywhere from a few days to a few weeks to kick in properly to kill the pain, so there is a small improvement at the moment, nothing spectacular just yet but I am hoping as the next couple of weeks go on, the pain will ease even more (I hope!) I have had them done many times before and sometimes they have worked great for a few weeks and then sometimes, I felt they didn’t do much at all. I will just wait and see how these go! 🙂 I have a Pots outpatients Clinic Monday Morning at 10am and have to meet my GP during the week to sort out my scripts to have ready for going up next week.

I have nothing major planned until I head to Dublin on the 8th of Feb, when I start in Harolds Cross, but I do want to update you while I am there also. I need to sort my WordPress app out on my phone, if not I will have to just take notes and do a full fill in when I am home!

Either way, I hope to find out if it is worth it for people like us.
I reaaaaaally hope it is! It would be lovely to have a place that provides safe respite for people with rare musculoskeletal conditions. I will keep you posted!

Until then, please keep up to date over on the Facebook Page, Twitter and of course The Private Support Group if you would like to share your stories, experiences or questions with like minded and like bodied people like ourselves in a private and safe environment, please feel free to join us, just send a request and ill be sure to let you in 🙂