Latest in saga of disastrous graft op

[rosemary johnson]

This is totally, utterly surreal!!!

I got back gome this evening to find a letter on my doormat from A Certain Hospital (where the disastrous op was done).
"Oh good!" I thought. "This will be the report from the eye-neurologists I went to see recently about why I'm so very light sensitive."
But no.
Still no word from the neuro guys. Which is pretty annoying, as they promised they'd send me a copy of the report. And I haven't heard anything from them about them having put my neck out again. DOn't know what they might say about that, but "sorry" would be nice for a start!

Nope.
This letter was from - well, pp'd for - the Chief Executive of the hospital trust no less.
Headed with a line giving the complaints reference number, thanking me for my email which he received on 6th October (! letter dated 20th), advising me he has instigated an ivestigation, and enclosing a leaflet aout the complaints system.

Now, I may have many complaints about the place and the "treatment" I've received at certain times and from Certain People - but I've never sent any emails to the Chief Exec, or that I intended or expected to be treated as complaints and passe don to him.
If he's right about the 6th as the date he claims to have got an email from me, it can't be about the neruo person putting my neck out.
SO I'm baggled what it is he thinks I've complained about, or why.
Though I have to admit I have been thinking I ought to get on an write up my various formal complaints.

This is totally weird and surreal!!!!!

I suppose this means yet more time on the phone to that place tomorrow. Sigh.

Meanwhile .... my wonderful chiropractor has had a second go and straightening out my put-out neck again - he got it straight once, but it went out again very easily if I rolled over awkwardly in bed - and it is now fine and the remaining nerve-pain twinges have now stopped. SO I'm no longer climbing the walls but am still very very miffed.
The grafted eye still spends most of its time feeling sore, dry, itchy, bloated (like it's been overinflated.... dunno if this is an effect of real too-high pressure, or just my imagination from knowning the pressure is a problem) and looks red and veiny and sore all the time. I suppose I ought to try wearing its new lens again before my contact lens clinic appointment next Wednesday, but really don't feel keen on trying - it looks as if it has had a lens in it far too long, permanently.
And the other eye - the one that is my eye still - is now sore too.
Duke has a hoof infection. Was supposedly picking all the mud, dirty bedding, bits of grass, etc and scrubbing it out in salty water this evening to give it best chance to get better. Duke is not keen on this, and keeps pulling his foot away from me and putting it down again - on layers of wood shavings bedding - and at one stage kicked out and sent the bucket flying.
Splashes of lukewarm, salty and very muddy water, with loadsa woodshavings floating in it, splashed across stable, right across my face and in my (only working ) eye. With 2 contact lenses in it at the time.
Ow. And othr expressions of heartfelt feeling!
Try to finish his feet off with waht little water is left, and by feel as can't see much at all by now. And up to elbows in muddy slty water, wet wood shavings, bits of mud and goodness knows what else (black pus from hoof infection, anyone?)
And the only clean water is cold and comes from a standpipe coming through the fence at the bottom of the field.....
The feeling of having dirty woodshavings in the eye has at last gone. I only hope the eye has not caught the hoof infection!
Meanwhile meanwhile, I still ahve to decide waht to do about this ""interesting"" letter Ruth the lovely asthma nurse found recently on my GP's computer.....

ANyone else ever had a letter out of the blue about a complaint they didn't know they'd made??!
Rosemary

[Andrew MacLean]

Rosemary

This is really intriguing! Did you not send any eMails or letters to the hospital on October 6?

Is it possible that the chief executive has a letter from someone else that was written on that day, and that this other person's letter has been accidentally associated with your file?

Did you ever read any Kafka?

Andrew

[rosemary johnson]

Kafka, Andrew? .... dunno about that. There are two Rosemary Johnsons - at least 2 - who are patients at the same hospital, and we once had appointments on the same day in the same clinic, which caused a lot of confusion. SHe's Mrs - and I answer to Miss, Ms or Dr (if anyone wants to flatter me!). I think we may actually have been muddled up before. I mean, if you (or your patient) is called John Smith (with apologies to our webmaster!) then you're used to there being more than one of you inthe world. But there aren't that many Rosemary Johnsons.
My dentist is in an even worse position - he has 3 of us!
I've checked my email outbox, and find on 6th October I did send what I thought was a private email to someone I met through a "mutual acquaintance", who is in fact a Patinet Representative from another area, who in the past I've relay various patient concerns to, and in the end kicked off the process of getting me transferred to a new consultant. It asked how he was getting on with one of those, asked for a spot of clarification of a couple of issues, one of which might be another general issue of policy that might interest him (see Dr........ who? topic). If that's arrived on the Chief exec's desk labelled a complaint, I'm not sure how or why and what bit in particular they're taking as a complaint! THe person in the CE's office I got through to said he didn't know anything about it, and asked me to phone again whent he person who dealt with..... "Can you please leave a message to say I called and anm baffled and please ring me back?" I asked and got him to take down my phone number. We shall see.....
SPent most of today lens-less and only put it in (my own eye, that got the muddy water and woodshavings treatment) this evening to go out tramping the streets. Started hurting after three and a half hours (so apologies for the typing!) - really hoping it hasn't now got infected.
Meanwhile have also "bitten the bullet" so far as booking an appointment to go and see (soon to e ex-?) GP about the letter neither he nor they thought to tell me the hospital had sent him in AUgust - until the asthma clinic nurse found it on the computer....... something else I am not looking forward to at all, but I suppose will have to be done.
Rosemary
PS: anyone got any idea what yo-yo-ing potassium levels might signify? - I keep getting mad cravings to eat loadsa loadsa bananas, and at other times, I can't face even the thought of a banana. ANd no, I'm NOT!!!!! pregnant!

[pepepepe]

Rosemary,

I'm not sure where I heard this but apparently if you cough too much you can loose potassium, but please check this out as I'm not 100% sure where in fact I remember this from.

With the complaint, may be someone was doing you a favor ? or it might be a policy to high-light events so to improve things ? I also wanted to say that a "no blame culture" will make it easier to improve things/make people feel better that they can be a stake holder in this. Its always should be welcome making positive suggestions, being approachable from the "other side" also (which I think is happening here, which is kind of nice to see). All this will help people to step up and hopefully put them more at ease to - actually - make these suggestions so that the same unfortunate situation don't arise for someone else. They do need to know to do this. We don't want a situation like "the emperors new clothes"

Pepe

[Andrew MacLean]

Rosemary

Abnormal Blood Potassium Levels:

Blood levels of potassium may fluctuate due to kidney disease, diabetes, vomiting, as a side effect to certain medications, fluctuating hormone levels, amount of potassium in the diet and blood pH.

http://nutrition.about.com/od/foodfun/p ... _foods.htm
I am trying to be careful here. When my son was about 11 (his older sister being 13) he noticed one day that she was a bit grumpy. Trying to console her, and to let her know that he loved her still, he spoke the immortal and unwise words "It's okay, I understand, it's your hormones". Nothing in his eleven years could have prepared him for what happened next!

So, Dr. Rosemary, could it be a side effect of some of your medications?

Andrew

[rosemary johnson]

Well, Andrew.......!
I haven't been coughing or vomiting recently; blood tests only a few months ago came out os OK for kidney function and not indicating diabetes.
ANother set of blood tests said my hormone levels were normal - if they were ever normal inthe first place!
It is possible something in the medications - beta-agonist asthma inhalers, maybe???? - is affecting someone K-related.
It's also possible that I've been overindulging the urge for bananas and getting too much of a good thing. We have some guys with trestle tables covered in those plastic bowls who've recently taken to setting up their stall at the corner of my street, each bowl a pound. FOr bananas, that's about 2/3rds the price of the supermarket, and what's more their bananas are a rather tasty sweet variety. And once when I was walking up the street near to their closing time, they offered me 2 bowls for a pound. I said no, as I couldn't eat that many before they went off, but would have 1 for 50p, and they poured both bowlfuls into my bag after all!
We're only about 10minutes walk from Spitalfields market, so I suspect they go down there early morning and get a van full - and they can't ave many overheads; only a pile of bowls and a trestle table.
I will askk thedoctor when I see him about the potassium.
I'm sure someone was trying to be helpful and useful in passing on an email - I was still very surprised, though. I'd also like to know whether the CE's office got all of it, and is trying to process a particular part as a specific complaint, or is trying to make sense of some general queries stuff. And I still think it's surreal to get a letter thanking me for a complaint I didn't know I'd made!
Rosemary

[james mckinlay]

i am so sorry you are suffering so much i really hope it works out for you in the end i was interested in your post very much i have been extremely sensitive to light since my grafts and one of those was 6 years ago and the other 3 years ago. im no registered visually impaired (partially) i would take this as high as you can its horrifying to read how much yoou have suffered. again sorry to hear of your pian and suffering all i can say is that the forum has loads and loads of caring members who are always willing to help and support each other

all the best

james

[rosemary johnson]

Hallo James, and thanks for your kind words.
I've been getting more and more light sensitive for the past, oh, 20 years or so - it isn't anything directly to do with the graft.
In fact...... I'd been complaining about light sensitivity for ages, and eventually someone in the contact lens clinic got me referred round tothe "medical" side to see about the sensitivity.
So I went and told the young woman "deputy" all about it and she asked lots of questions.... and her consultant swanned in and offered me a graft instead. I was so shocked I fell off the chair and through the floor (well, nearly) and clean forgot to ask how that would help the light sensitivity.
The verdict from the neuro-people when I did finallys ee them was: there's nothing in particular wrong that they can find; I'm just hyper-sensitive. Oh, very helpful!
SOrry to hear you're in the same boat with sensitivity, particularly post-graft. I find it more nmaddening than the low visual acuity, if anything.
Been out for several hours today tramping the streets and both eyes feeling very dry now.
Rosemary

[Andrew MacLean]

I think that they often offer a graft where there is increased sensitivity to light because the commonest cause of this increased sensitivity is the way in which distorted corneas will scatter light into the eye, so that it shines on parts of the inner eye where it is not supposed to shine. This causes pain; in my own case this pain was very severe indeed.

The idea is that by removing the 'scattering effect' they can thus remove the cause of the sensitivity to light (they insist on calling this 'photophobia', but I resist this label because a 'phobia' is defined as "an extreme or irrational fear of or aversion to something "; while my own aversion to light was extreme I insisted that it was not irrational!).

I have always wondered whether the continuing aversion to light that some of us experience after a graft (my own aversion is now much less pronounced than it was before) may be due to a similar 'scattering' effect at the scar between the new cornea and our own eye?

Anyway, all the best; it is good to see you posting again James. I hope you are well.

Andrew

[rosemary johnson]

The explanation you've just posted, Andrew, is what various people have been trying to tell me for years.
I've long been not convinced about it - because they also say "THat's why it's worse when you don't have your contact lenses in" and I tell them that, on the contrary, putting the lenses in make the light sensitivity far worse!
Also, if it were a "normal" feature of the scattering effect of a KC cornea, why as I so much worse affected by flash bulbs that a whole conference room full of people at a KC group conference? - someone pops a flashbulb and I'm the only one, so far as I could tell, screaming and dropping coffee on the floor. And a KC group conference might be quite likely to attract, as does this board, people who have the condition more severely than the "silentmajority" of people with non-troublesome KC.
The neuro-ophthalmologists I saw recently, incidentally, were pooh-poohing this - trying to tell me that no, I was wrong, it wasn't KC or any other eye condition that caused photophobia...... blah blah blah. "That," I said, "is EXACTLY what I've been saying for years and years to the people who try and tell me it is!"
And the so-and-so surgeon who did that confounded disastrous op (the one I've been having all the hallucinations of strangling/bashing in the skull of) said on op day itself he didn't think the sensitivity was anything to do with the eye. It is, he said, not unusual to find people who are photophobic and there's nothing evident wrong with the eye itself, the problem is in the optic nerve or th bit of the brain that processes optic nerve signals. WHich, he said, would put it into the realms of the neurologists.
I remember being just about alert enough to think this was the only bit of sensible conversation he'd yet come up with, and ask if he could do that neurologist referral directly from the eye hospital, to which he said yes (and I wasn't sure if I believed him!) But was too far badly dehydrated - and with a splitting dehydration headache - to be able to think properly at all .... let alone enough to reflect for a ffew seconds and say "Do you mean, you could do this graft and I'm going to end up even more light sensitive than ever because it will only make for a better focused pain from the optic nerve, or optic nerve signal processing centre? - and so I'll be even worse off than before?"
I suspect I'm far from the only one here in this position - and that the people who are more light sensitive after a graft (a while after, I mean, not just immediately post-op) have light sensitivity which is nothign to do with the alleged scattering effect at all.
The Neuro people did say that light sensitivity is quite often found in people who have other eye conditions too, but not because the other condition causes the sensitivity, but because they just come along together.
Actually, post-graft I can sort-of see what the scattering theory people mean - because I can see the way that light is scattering around and creating, like a yeloowish (in low sun etc) film across the front of the non-=grafted eye. As someone once said in another thread, it's like the like is getting inthe way of seeing things. And particularly in my own eye when it doesn't have a lens in.
But that's not what hurts - in fact, it's almost as if it is acting as a shiled to the pain. It is just a, well, a yellowish-in-low-light film across the vision. What hurts is, especially, sharly focussed bright light, the more focused the worse, making a burning sensation deep inside my head, as if the focused bright light is now bright and powerful enough and be setting something on fire. You know, like boy scouts starting a campfire with some dry leaves and a magnifying glass.
Enough flashbulbs, and it really does feel like my head is burning away from the inside out.
If you see what I mean......!
Rosemary