Trial and Error

I hate being a guinea pig. Well, ok that is probably an over-exaggeration. But that’s what it feels like, this state of trial and error.

I had yet another follow up appointment post-resection yesterday. I can’t say that I was particularly nervous. I have been far to busy with life to think properly about my health issues; too wrapped up in work, recovering financially from my time off, preparing for Christmas, dealing with a child that is 5 going on 15, other personal issues I could very happily do without at the moment and trying somewhere in there to train for the marathon I will be running next year. Saying that, yes the one thing that was lingering in my subconscious was, of course, my vocal issues, which are far from being resolved. Anyhow, I went there in hope of seeing the maestro himself to work out what to do next.

And low and behold I actually came face to face with him. But, rather than jumping ahead, lets keep the events from the day in chronological sequence. I arrived at Charing Cross Hospital only to find out that the waiting time was a hardly worth mentioning 30 minutes. That is almost on time in that place. No sooner had I got my coffee and sat down my name was called – by none other than my special friend. I have to say since being discharged from hospital our doctor/patient relationship has improved greatly. This could be due to the fact that he has been dealing with further stroppy patients since my time in all-inclusive care.

My larynx was scoped yet again and the very positive news is that my airway around the operation site looks clear. No further scaring or irritation. Mind blowing is all I can say. However: there is apparently still visible swelling below my vocal cords. To use the surgeons words ‘It looks oedematous’. This is where ‘The Man’ himself came into play.

First question being ‘How is your breathing’, I made the mistake of saying ‘generally fine’. This caused him to look somewhat surprised, leading me to describe that I could not hear myself breathing and I could even walk and talk to people at the same time, something which had been virtually impossible since God knows when. Now looking rather relieved he had a brief chat with my special friend and it was agreed that, on the basis of possibly having silent reflux causing the swelling, to try me on antacid tablets. And, just to be on the extra safe side, I got given another round of antibiotics, you know, ‘just in case’.

Looking at, or better said listening to my voice, he said that I may have to look at having a vocal cord augmentation, should the current treatment and future speech therapy not suffice. Yay. But at least that would not be an issue until sometime in the future. And he did seem rather enthusiastic about a positive result from coaching my cords.

I know this isn’t exactly a common condition and most, or better said ALL of what I have had done so far has been a kind of trial and error. But I am getting rather fed up with this ‘oh lets try this or that to see if it works‘. It feels kind of like brewing a magic potion: a pinch of this, a touch of that….. nothing definite and lets see what happens. Either the mix will turn pink or blue. And if it doesn’t, lets try something else. So many times I have had to endure chemicals and poisons being pumped through my body. I don’t like the idea being 32 and on regular prescription medication. Even if it is ‘just’ an antacid and even more so if they don’t know whether or not it will work.

I have had a look online to see what else I could do to reduces this suspected silent acid reflux. The scary thing is that there are, in fact, rarely symptoms you experience. At least with my stenosis I can tell when something is not right. But, apart from the very occasional heart burn I have never had any GI problems as far as I am aware. According to the world wide web, you should be reducing certain types of food to help eliminate the overproduction of gastric acids. And from what I gather, the best thing would be to just live off bread and water.

I have never really had a bad diet. Yes, I occasionally pig out on chocolate, I have wine and all that. However I would describe my nutritional intake as fairly balanced. I avoid processed foods, starchy carbs where possible and try and integrate as much fresh fruit and veg as possible. Needless to say I am not exactly a happy bunny thinking about possibly having to change my entire diet just because it could be affecting my throat.

Before the resection ISS has been the cause for a certain amount of limitations. I didn’t think I’d end up swapping one set of limitations for another. So I try and not think about it too much just now, as difficult as it can be.

On a positive though, as frustrated as the National Health Service can be, and very often is, particularly where waiting times are concerned and the way patients get treated by clinic staff, I have never felt more looked after medically. I have had more post-operative follow ups here than after any other procedure in the past. Since being de-canullated 2 months ago, I have been on clinic follow up 3 times since then. Yes, if you don’t kick ass with certain things it just gets forgotten about, but overall, at least with this, it is much more closely monitored than it has been in the past. But still I ask myself: ‘Will there ever be an end to this?

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