Tuesday, 12 April 2011

My Story


Thanks for coming to read my blog.
This is my first post on my first blog so please forgive me if this is a little rough around the edges…

So, as this part is titled “My Story” I guess I should start with the basics…

I am a 29 year old (as of writing) guy from UK and have only just recently been diagnosed with ETD (Eustachian Tube Dysfunction) over past few months. I have suffered with re-occurring problems with my ears ever since I was a young child. I had numerous rounds or sets of “grommets” (or ear drum ventilation tubes) as I was growing up which were used to elevate the condition of “glue-ear”…
As a child I developed an irrational fear of anything going wrong with my ears which developed into a debilitating phobia when at about 13 or 14 years old I was unfortunate enough to be the victim of a firework prank (someone threw a firework into a shop I was in and the damn thing exploded at my feet perpetrating my ear drums and solidifying my fears).

As I grew older my ears seemed to ease slightly (particularly in my late teens / early twenties) and although I was back and forth to the Doctor’s Surgery every 4 to 6 months with ear infections, I lived a relatively normal life (with the exception of swimming – which I avoided any instance that would involve my head submerging under water).

My situation worsened over past 2 / 3 years when after routine trip to Docs to see about a particularly stubborn infection, I learned that the doc was more concerned about my loss of hearing and so, off I went to see an ENT specialist a few weeks later…
This particular specialist I’m not afraid to say was lacking in bedside manners and after some tests informed me that “all those infections you’ve had have actually worn away one of the bones that conducts sound in your ear and so I must operate to reconstruct those bones!”

… WOW! Talk about dropping a bombshell!

I asked if there were alternatives and what my options were, but he was so keen to pull out the scalpel that his responses were mute and vague at best. I also asked what the risks were and again I received the same vague response, so I kindly declined on the basis that I would need tome time to think about it.

A few months passed and i had only a few “flare-ups” which seemed to be eased by antibiotics.
I moved home and met my soon to be wonderful wife – life was good until I started to suffer from what I thought were repeated infections which antibiotics did not seem to help at all only this time they were accompanied by other symptoms (which I had experienced before but nowhere near this severely) – I would get the feeling of being able to hear my own internal sounds – my heart beating, my own footsteps booming in my head and worst of all my voice reverberating in my left ear like a trumpet (fuzzy as if someone turned up so loud that it “blared”).

These symptoms as anyone who suffers with a similar condition will attest absolutely floored me, leaving me depressed, disorientated and helpless.

Months of trips back and forth to the doctor eventually resulted in a referral to another ENT specialist.
This time the specialist was much more understanding and so much better equipped to answer my questions. He explained that although the issues with the conductor bones were not helping (the cause of my hearing loss) the operation to repair would be risky at best and could result in permanent and complete hearing loss in the affected ear. He went on to explain that the underlying cause for all of these years was a relatively newly acknowledged condition named ETD and that I have suffered particularly because I have an unusually narrow Eustachian Tube on my left side which keeps filling with fluid and causing not only the infections but the debilitating symptoms which I keep experiencing. He suggested what I have since learned are the “usual remedies” – nasal sprays, antihistamines and steam along with blowing my nose whilst holding it pinched so as to pop my ears and equalise the pressure…

… None of the remedies suggested worked!

**Apologies if this is a little long winded, (I’m almost up to date) I just find it easier to try and organise my thoughts in sequence and… it’s been a very long winded two years of late J**

…Back to see the doctor I went (now feeling thoroughly lost and unsure). The doc was helpful and I know that he was trying his best to help but it seemed that I had exhausted all of his knowledge on ETD so he referred to the “top” ENT specialist in my area who again confirmed that the cause of my suffering was indeed Eustachian Tube Dysfunction but said that there was not a great deal he could offer in terms of a remedy or solution to my problems other than to place more ventilation tubes to equalise the pressure with warnings of risks and further permanent damage to my ear and advised that this would only solve my problems temporarily as the tubes would fall out and my problems would likely return and so I simply had to find a way to deal with my condition – when I don’t have a “flare-up” I’m fine, completely back to my usual self, but when the tube fills it lasts anywhere between 1 to 9 weeks (my latest “bout” still not cleared up after 9 weeks and counting) and so “dealing with it” is not as easy as some might think…

… I left feeling hopeless. Several weeks later I was right as rain, everything had cleared up and I was fine (funny how the brain seems to automatically “forget” about the bad times when things are ok) and so I told my self – when it does happen I just need to find a way to deal with it until it passes.

…Cut to today – latest flare-up: 9 weeks and counting…

·         Ways to deal with it = 0
·         Days managed to “cope” = 0
·         Days felt miserable = 63
·         Times hoped/prayed that it would get better “somehow” = 90000000000000
·         Times missed out on doing something that I would normally enjoy = 150
·         Nights spend in house “instead” of going out with wife / friends =  >10
·         Medications / remedies tried this time = 6
·         Times back to Doctor in hope that he has some suggestions = 4
·         Trips to see a “counsellor” = 2 (then give up as I realised that I don’t fit into a “depression group”)
And so at my last session with the counsellor he suggested that I should write down how I feel and that would at least help me understand my own worries/fears/concerns/feelings.

I must admit that I have spent hours online trying to find some sort of “miracle” fix to my illness without any luck at all secretly hoping that someone out there has found a way to ease the symptoms but all that I found were more people on the same road, all desperately searching for the same thing and asking the same question – “how can I make this go away!?”

Most days just seem to slip away at the moment (I get up, I work and I go to bed hoping tomorrow I will wake up and this last “bout” will have eased) and I’m starting to resent myself for wishing away precious time but I do find myself thinking “if I can just slip past the next day/week, until the flare-up passes then I will be back to my-self again!”

Today, whilst my brain was against my will running around after one of those very thoughts, I decided that I might actually take the counsellor up on one of his suggestions (believe me he had very few useful suggestions that were not related to depression or anxiety control – none of which fit with my situation) and write something down.

So, here it is… My story in blog format. I must confess my intensions are not entirely selfless. My hope is that there are people out there suffering through the same days that I suffer and that can share their thoughts and give misery some company (whilst secretly hoping that there is one happy guy/girl out there that has found a way to ease these terrible, debilitating symptoms of a condition that does not seem to have any real remedy).

I will keep posting as the days go on and as I try anything new so that if I do happen to find anything which helps I will share with the world and hope to help those that suffer as I do.

I hope that my story helps others that perhaps have this same condition understand that they are not alone, others feel the same way – somehow that is the only thought that comforts me when things seem bleak.

Best Wishes!