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!)

 

ERCP In The Morning!

It is happening!

I got the appointment for the ERCP on my ‘Sphincter of Oddi Dysfunction’ (SOD) a few weeks ago and confirmed the date for tomorrow, the 21st July in UHL.

I rang this morning to confirm everything was going ahead and I was told that because of a few emergencies that have to happen first, I may not be called at all so I was left waiting until after 4pm today to see if I would in fact be called for the procedure!

I was irked to say the least as I have been admitted to hospital twice since December for the pain and have been in constant pain since last being left home in April. The pain has also increased in the last couple of weeks and has gotten pretty bad the closer I got to this appointment. I think the pain meds I am on are losing their strength and the pain in the last few days especially has been bad enough for us to consider going to A&E, but I held off from going in knowing this appointment was coming.

It turned out that at about 3:30pm, I got a call back from the hospital and was told I was on the list for the afternoon and I have been called in so… yeah! It’s happening!

Until I speak with the surgical team tomorrow I am unsure if I will be staying in or not, but apparently this is only the first of a few ERCP’s on the SOD I need to have done. I was told that to weaken the muscle they would need to repeat the procedure a few times, but I know nothing else about what may happen or how often they need to do it, dates, recovery time, illness in between, anything! Which is currently preventing me from making plans to get back to London for further treatment. Until the pain is eased enough for me to travel (and I have been too unwell to travel since last December) and the procedures need to be out of the way but as soon as I see a clear path I will be making plans once again.

So in I go at midday, will hang around for a couple of hours I am sure, then will have the op, I will be knocked out for the procedure and it should be straight forward enough… have I ever been straight forward though?! They should monitor me for about an hour after to make sure all is OK and will then either admit me or send me home, no idea!

Either way, I will fill you in after the event!! 😉

The Sphincter of Oddi and Other Stories!

Say that in the voice of the narrator from He-Man and you have a pretty formidable title there!

The last time I was admitted to hospital at the end of March, early April the surgical team came to the conclusion that I could possibly have something called Sphincter of Oddi Dysfunction (SOD) that was being masked by what they thought was Gallbladder pain.

In the last blog post I outlined what this was and that there is a test to check for it called an ERCP, endoscopic retrograde cholangio-pancreatography, a procedure that uses an endoscope and looks directly deep inside the duct system while taking pictures and measuring pressure. You have to be sedated or under general anesthetic as it is way deeper into your system that they have to look than a regular esophageal, stomach endoscope or similar.

While they do this, they inject some Botox into the tiny sphincter itself which relaxes it and allows it to open again. If after about 2 weeks your pain is gone, this is a sign you have the dysfunction. Sometimes if the pressure in the bile ducts is measured as too high or if the surgeon deems it necessary at the time they will cut the sphincter muscle first time.

Cutting the sphincter of Oddi muscle surgically during an ERCP is called a sphincterotomy. It’s generally effective and relieves symptoms of SOD about 70% of the time.

The long term cure for it? a series of ERCP’s where again I will be put to sleep and they have to cut the sphincter to weaken it to the point where it can’t clamp up any more. This should take a few turns because if they do it all at once and cut straight through it, there is serious risk of heavy bleeding and Pancreatitis with this so they do it in small stages over time to make it safer.

A video of the procedure can be seen here, if you have the stomach for it! 😉

Since coming out of hospital in early April, I have had a number of follow up appointments. I’v been seen by a gastroenterologist in Nenagh General Hospital. He reviewed my case and changed my pain meds saying that the morphine I was on was a spasmodic drug and wasn’t helping the pain in my side so told me to ween off them and start other anti-spasmodic drugs which he prescribed. He also gave me new antiemetic meds for my stomach and gut as I am constantly having trouble with it. He said getting back over to London to a GI specialist over there when I am well enough is greatly advised, but to wait until I am well enough.
He also prescribed me with a spray for under your tongue, usually used for people with angina but said as it’s job is to open the blood vessels and relax muscles that it may help the pain in my side, and it really does, although drops my blood pressure and gives me a cracking headache but I would rather have that than the pain in my side!

I have been to the Pain specialist in Croom hospital for more injections into my Sacroiliac joint and hips which usually takes about 3 days to a week to kick in, but of course I got cocky and tried to hobble out of the bathroom the day after getting them, without any chair, crutches or support, thinking I could do it and SMACK! I slapped off the ground hurting my hip, but thankfully not seriously so it has healed again and the injections have slowly begun to work to ease the pain in my lower back and hips. Unfortunately though they only ever last about a month so I am coming to the end of that relief already.

I was back into the University Hospital Limerick for a follow up from when I was admitted last and to see when my ERCP will be. I was told I should be called sometime this month so I am currently still waiting on the appointment and hopefully I will be called soon as it is getting very sore and uncomfortable.

and finally… My powered wheelchair finally arrived! I had to chase it up through the local OT manager because I was getting nowhere emailling my OT about it. The manager got things moving immediately once she knew I had been waiting nearly 2 years and the replies to my emails were just one excuse after another, it finally arrived a couple of weeks ago, Miles too big for me, refurbished and not new but mine, great fun and gives me great freedom! The powered chair deserves a blog post of it’s own so I will do that as the next post. It’s name is Marvin and I’ll explain where that came from too! 🙂

For now, that’s all my current news! 🙂