Saturday, February 04, 2012

So, How Am I?

I'm great! It's cosy, warm and snug here in the land of denial. I much prefer it to the real world where we're back to thinking scapegoating and demonising various groups is an altogether awesome thing to do. Give me fluffy and fake any day over that kind of reality! So it should say something that I'm currently finding campaigning emotionally safer than confronting my personal circumstances. Ok...so campaigning has cost me a bit of health, definitely cost me any semblance of a personal life or relationship and been all a bit traumatic at times...but given the state of play elsewhere in my life that's all reassuringly stable.

I finally went to see the 'proper' NHS Ear Nose and Throat doctors. The 'faux' ENT expert I originally saw was at a private hospital, funded by the NHS. For some reason that no-one can quite discover, when my GP originally referred me the appointment defaulted to the private provider rather than going through choose and book so actually I didn't have a choice about where I went. I did have to endure a particularly patronising conversation with the booking people for the private hospital where they continually stressed 'but it's the private sector' in that 'dear god but are you stupid or something, don't you know private is best' tone of voice but I assume the costs of that are also covered by the public purse rather than it being an optional extra.

In the interests of fairness, had I been a 'worried well' type who'd suddenly lost their voice and needed to have their throat examined within a few weeks the appointment at the private hospital would've been fine. I'd have had enough time to drink the complimentary coffee and be reassured that a frog hadn't set up permanent residence in my throat. Ok, so I *still* wouldn't have had any speech therapy to remove the imposter frog from my throat, which after three plus months being able to talk properly could be a teensy bit of an issue for my employers, but that's the kind of irrelevant triviality the NHS regularly have to deal with and all a bit too much for the private sector who focus on individual frogs as opposed to their ability to colonise in throats.

However, as I'm not 'worried well' and have yet to discover how to profit from the illegal frog colony in my throat, the private sector appointment paid for by the NHS was a complete waste of everyone's time and money. So, having been back to my GP for another appointment so he could write another referral letter, that like the first referral would all be paid for by the taxpayer, my taxpayer funded care finally ended up in the right hospital. The NHS hospital didn't have any posh coffee or nice armchairs, but that didn't matter as I didn't have time to enjoy any of those facilities before I was called in to see the doctor. Really, what has it come to when NHS waiting times don't allow for reading a 10 year old copy of the National Geographic?

After some initial bewilderment by the doctor as to what on earth had happened to my voice and why there was no mention of that in the referral letter we got off to a good start. We replicated the examination already done by the private sector (a scope up your nose and down your throat for those who need mucus related details to enjoy the story!) said a few 'EEEEEEE's' and did some swallowing. Happily the NHS doctor understood what I meant by 'laryngeal malacia' as the private sector guy looked at me uncomprehendingly when I raised the subject, and confirmed it in layman's speak. Your larynx is collapsing on itself. Both NHS and private doctors had a similar look of horrror in their eyes when I explained the dislocating larynx process, but the similarities ended there. Private doc said he had no clue how to deal with that so we weren't going to even discuss it. NHS doc said he didn't have much of a clue how we were going to deal with that either...but that we'd better have a good think and come up with something!

So we did. Sort of anyway. With the understanding that I have to provide the Ehlers Danlos expertise a plan was plotted. In addition to the lazy, workshy larynx collapsing on itself and refusing to do it's job, we talked about the swallowing issues the private sector wouldn't. Upon examination there is a 'bit of a gap' when I swallow, which confirms that I'm at risk of aspirating, ie inhaling bits of food, saliva etc. Generally aspiration is filed under 'undesirable situation', but I suspect there's a special file area for 'undesireable situation with a side order of not much we can do about it'. We're working on the assumption that this is all caused by my layabout good for nothing EDS tissues, but covering all bases in typical NHS fashion by doing another test just to ensure we're not missing something. Missing something, is btw, doctor speak for 'fucking great tumour'. Neither doctor or I believe that to be the case, but we do both feel the sensible thing to do is make sure anyway.

So in a couple of weeks I'm off for a barium swallow. There was much emphasis placed by the doctor on warning the radiology department of my likelihood of aspiration before they do the test...which made more sense when translated into 'non medical' speak by my ex. "Don't inhale the barium, that counts as definitely ungood especially by the people who die from it." It is possible the test won't be done on the probability of inhaling the barium, but if it goes ahead it'll be done in an NHS hospital with an A&E and ITU departments within sprinting distance should there be any issues, whereas had the private hospital considered this option and run into problems they'd have had to call and ambulance and blue light me a mile down the road to the NHS hospital which has the 'don't die there's a dear' facilities the private one lacks.

Once I've had that test done (or not done) I'll go back to see the NHS ENT's and we'll work something out from there. They are chasing up the speech therapy referral as not swallowing properly trumps not talking properly, but as speech and language therapy was a cinderalla service pre Coalition it's generally got horrendous waiting lists. Budgets for things no-one really understands the value or importance of being the easiest and earliest to get slashed. Which is a shame for all kinds of reasons, whether it's the 6 year old who's no longer entitled to speech therapy having their adult life chances and future ability to work jeopardised by not being able to communicate like everyone else or the 36 year old hoping they won't choke to death just yet thank you.

What we will not be considering are any aggressive interventions or surgical procedures for the sake of 'doing something'. In some cases a stent would be appropriate to stop floppy tissues collapsing on themselves, but with someone who has EDS that'd be the equivalent of packing peaches onto wire wool and then wondering why they were so badly damaged by the process (imagine what a nail file would do to the soft skin of a peach for visuals!) Really this all hinges on long term speech therapy - it's like physiotherapy for your talking, breathing parts. Long term speech therapy would also cost alot less than A&E visits, repeated antibiotics and the other kind of interventions I'm refusing to think about which happen when people aspirate alot.

So yeah, I'm just tickety boo. Well I would be if that damn frog would just feck off and let me get back to enjoying denial...

6 comments:

sad times said...

Tickety boo too. I know that place of denial and distraction.But we have to go on with tickety boo..some how we do.
Your writings and bogs echo such a lot.
Thank you

sad times said...

Meant blogs. He he

James said...

(As promised, now equipped with a name!)

A friend of a relative had the other side of this experience - the one which ends "oops - we DID miss something - how about a nice course of chemo?" (To make it worse, the doctor who missed it is the friend of another relative.)

I still remember speech therapy when I was young (neurological problem: born in an NHS "hospital" that lacked any of those 'this baby's not breathing, maybe we should fix that' people). Frustrating at times, but it got easier - and as a fringe benefit, I don't sound drunk even when I am, since apparently alcohol impairs the nerves I don't have anyway.

Findlow said...

you're brave and funny and a brilliant writer. In a fairer, parallel universe you'd be PM (ok, job-share PM with Sue Marsh), with fully functioning soft-tissues, not your pesky work-shy/false illness-belief ones...
You're paying a huge price for (literally)speaking up. I too sincerely hope that the damn frog fecks off, and soon. Thank you.

Anonymous said...

Possible sci-fi extreme option - a tissue engineered trachea - http://www.sciencedaily.com/releases/2008/11/081119092939.htm.
Of course your stem cells would still produce silly EDS tissue, but on a suitable base substrate it could possibly be made to maintain a better structure and be biologically viable with your own tissues. Not just to avoid auto-immune issues, but reduce EDS tissue/too strong stent material mismatching.

FichenDich said...

While my voice was never affected, I was given a referral to The Swallowing Clinic due to the occasional choking episode. I was given a biscuit to chew then swallow, then a tiny cup of fruit punch to swallow. After I swallowed the liquid the doctor became quite animated with excitement shouting the word "incursion". She grabbed another doctor to take a look. She also swiveled the video monitor so that I could see as well.

It was absolutely amazing ! Sure enough when I swallowed liquid a tiny amount went down the wrong "pipe" ! Long story short, "There is nothing we can do about it. You'll have to be careful swallowing liquids."

The thing is, it was never drinking that caused a problem ! It was my own saliva ! I suppose I must amuse myself with the mental image of a coroner ruling "death by aspiration of saliva" !