Sunday, October 31, 2010
I have achalasia - I am sure many of you know this by now and I had surgery (a heller myotomy in case you are interested) in early 2009 to treat this condition. I think achalasia is a condition and not a disease, since it is a situation where your gullet doesn't work properly and the normal knock on implication is that the valve at the top of your stomach won't open to let food pass. As an aside, I don't really know what are conditions, what are diseases and what are merely complaints, but there you go, you could fill a book with stuff I don't know! Achalasia varies a bit in how bad it can be, but in my instance, the nerves to my oesophagus just don't work at all so I have no opening of the valve at the top of my stomach and no peristalsis (the squeezing action that pushes food down), past the initial swallow in my throat. The surgery opened the valve (so now it doesn't close) and my gullet acts like a drainpipe which I just shove food through. There is no cure for achalasia, but the surgery treats the worst symptom and I am very happy with the result that I have had. I eat fairly normally and most things are fine and nice to eat (unless they are swede or turnip - both of which I hate!).
The odd thing is, that there are some foods, which I still cannot eat at all. Now I understand that before I had the valve opened, anything lumpy was going to be a problem, but now, if a food is well cooked or soft, I don't see that there should be an issue. So, why is it that when I cooked sweet and sour chicken, I swallowed it and it just sat there, just below my throat and refused to budge? Copious quantities of water (ok, I own up, it was wine!) and it went down. Maybe it's the sour bit that does it? I understand lettuce leaves (low gravitational coefficient) and not chewing your toast properly (too lumpy) but I just didn't get the sweet and sour thing at all.
Odder still is fruit. Especially 'big' fruit. I don't really mean melons here...but apples for example. Apples are just awful! Raw apples are simply impossible and even stewed can be an issue if not mushy enough. Pineapple, orange, melon and pears - all a problem to a greater or lesser degree. Strawberries, raspberries, grapes, blueberries and prunes - all fine - but then they are little. The odd one out in this whole equation, is the banana - comes under the category of a 'big' fruit, swallows like a small fruit. So what's that about? And why fruit? Why apples especially? And even odder is that my surgeon particularly asked me about apples and if I had a problem with them. They are considered to be one of the defining questions towards helping with an achalasia diagnosis. All of which is kind of OK I guess, but I just wonder why...what is it about the humble apple which makes it such an issue? And in that bunny hopping brain way that I have, I wonder if that's what the all problem was with Snow White - that apple she had wasn't poisoned at all, she just had achalasia!
Thursday, October 21, 2010
F*F lives in a part of the country quite close to a lake and one of her favourite pastimes is to go fishing there. Now F*F is a wheelchair user and lives independently along with 2 of the most lovely cats I have seen (apart from my own of course!) but I don't know if that has anything at all to do with her love of fishing - I think she just likes being active. I know, I know, some people would say fishing isn't very active, but believe me, in her case it is, as you will soon find out.
Anyway, she went fishing on this particular day and was lucky enough to catch two fish, which she was really happy about. She then discovered why hubby always says you should put your brakes on (not that he says it to her, he says it to me - all the time!) as she was parked on a little bridge (I think she meant jetty) on the edge of the lake - and it had a slight slope. In fact, it had a slight slope towards the water and in all the excitement of getting her fish, she didn't realise that she was rolling towards it...until it was too late and, as she put it "I get to take a unintentional bath in this lake"...
She went on to say:
"It was not so deep about 1 1/2 to 2 meter, but I get very wet. It was not so fun..."
- no kidding, I thought!
So, there she was, in the water, with her wheelchair and had to get back to shore. I'm guessing that wheelchairs don't float as well as people (I can check this with E2O who went in the river with hers once) and so it must have been quite a struggle to use her best lifesaving manoeuvres on an inanimate lump of metal. She says it didn't get any easier when she actually reached the shore too, as it was really slippery and covered with shingly stuff. Anyway, she managed it eventually (she's a real hero my friend!) and finally got back to the car. It was then she realised that she was soaking wet through and still needed to drive home and did not have anything dry to change into. She recounted this tale so well, I was in hysterics "You should have seen me", she said, "I looks very fun when I swim with the wheelchair"....
She did learn something from her adventure though and I shall put this in her own words....
"I shall have bath cloths on me next time when I shall fishing or brake my wheelchair very hard"
I think that's very good advice...don't you?
Tuesday, October 12, 2010
I am now heading towards 5 years post op (yes really!), and some things have stayed the same, some have got worse and some things have improved so I thought I'd try and put some stuff down about it all. I have to say that it's been prompted by recent hospital visits, but I will get to that in time...
First of all, if you are reading this in the pre-op stage and are wondering what your future holds, please don't expect to be pain free. Your back is a finely interwoven mesh of nerves, muscle and bone and screwing metalwork into it is never going to make it 'normal' - you may be lucky and your pain may improve, but the surgery is to straighten you up and hold you that way so that you don't end up your ear pressed against the window when you drive your car! Anyway, my experience has been just that, I am straight but not pain free and this is what I told my surgeon when I saw him earlier this summer.
He ordered a CT scan (I blogged about it a while back) and I duly had that done. The whammy came when I went back into see him for the results. I warn you right now, I am going to get a bit technical, so stick with me! He discovered that although it is normal to still have back pain after scoliosis surgery, my pain is not exactly normal when considered in relation to that. To start with, my fusion has failed at the top - between T9 & T10 there is no bone graft - on the CT, there's just a black space - "You see that?", said my surgeon, pointing with his pen, "Thats air that is."
I have to say, that this wasn't really what I wanted to hear, and thinking that in the very middle of my back, the only thing holding the bones together was 2 screws and a bit of metal (that I stressed to bits in Disney last year) didn't actually make my tummy feel any less wobbly... He then moved on...
"You see that...?" - he indicates another black space between L5 & S1*1 "You're supposed to have a disc in there*2 and it really looks very unstable. In a nutshell, your fusion needs extending - top and bottom - say 2 or 3 levels (vertebrae) at the top and we should really screw the bottom bit in to your pelvis."
Oh great, thinks I - that's an interesting start to a Thursday (at least I think it was a Thursday!) but at least it might go some way to explaining why my neurological symptoms have been a bit variable. Unstable joints, changeable neuro stuff - it all seemed to fit together. Ah...dear reader (I've always wanted to say that!), I hear you poor scoliosis people getting stressed at the nerve stuff...don't be, this is particular to me....! Anyway, he suggested going in to hospital and they would inject some kind of false joint jelly stuff in the gap at the bottom to see if it would help delay the bigger surgery for a bit. I saw him on the Thursday (I remember now, it was definitely a Thursday) and I was in the following Tuesday - not the treatment I am used to on the NHS I can tell you. He told me to go away and keep a pain diary and then see him again in a month - which is kind of where I am right now...
I go back and see him in a week or so. The big question is, is my back any better for it? Well, yes and no. Yes, I think it's better, but no I don't think what he did had much effect - I think that holiday in Turkey helped more. Do you think I could get him to prescribe regular sunshine all inclusive holidays on the NHS?
*1Technical speak for the very bottom of your back
*2 In fact, the only disc I have, below T8!
Thursday, October 07, 2010
I was just looking at my blog and realised that I haven't done much in the way of updating for awhile - so, do you think I've been busy, or am I just lazy?
Of course, before we went was manic and since we've come back, merely busy, but there you go, that's why I haven't done any updating recently.