Latest in saga of disastrous graft op

[rosemary johnson]

PS to the above: why I was offered a graft (well, 2 to be precise!) there and then, let alone in that manner, was somethign I will probably never know.
I can't think it was because anyone - certainly no tthe surgeon in question - really thought it would cure the light sensitivity.
It is very tempting to wonder why...... and to wonder whether he was more interested in me as a "canvas" for exhibiting his beautiful embroidery skills, rather than my real overall best interests.
Certainly his attitude on op day did not show any noticeable concern for the well-being of any part of me wider afield than a circle of cornea!
Which is why I refused to ahve anything further to do with him and am now under teh tender (?) care of someone else. Well, actually now more than one someone else.
And, no doubt, why, when I was abruptly woken up before I was really "ready" to surface by the distress signals from the damaged brain centres, I was so furious with him for being the root cause of the damage.
Even if the precise form of that fury was not anything like my normal self!!!!!!!
ANyone got any ideas how to word a question to my new consultant about "why was I offered a graft and do you think it was a sensible suggestion?" - tried to ask someone this at apptmt before last but clearly didn't phrase it right as she clearly didn't have a clue what I was asing or why and got very shirty and I ended up in tears over her slitlamp with her telling me she couldn't be doing with this an dhad other patients to see....... and then buzzed off to lunch as soon as she'd got me removed, apparently!
Rosemary

[Andrew MacLean]

So, maybe Light aversion is a symptom of more than one condition; this makes it very difficult to treat. If you have KC and you also have another condition that exhibits light aversion as one of its symptoms, then they are likely to presume that the light aversion is caused by the condition that they are already treating. There is an odd tendency that we all have to continue with our working hypothesis even when there is accumulating evidence that it is wrong.

In your own case, Rosemary, your repeated objections that your light aversion got worse when your lenses went in would sound like pretty clear evidence that it was not caused by your KC. Yet you did have KC and you were being treated for it; so the human tendency to ignore, or set aside, disconfirming evidence meant that you were probably not being heard.

I am afraid that I made the same assumption; you see, I have a classic keratoconic version of light aversion. I am sorry for making the usual mistake and compounding your already tortured journey towards being heard. The forum really is a place where we do well to pay attention to what is being said rather than assume that we know what is meant! Please accept my unconditional apology.

By the way, I dislike flash photography also. I was presiding at a wedding recently and, although the photographer knew that I disliked flash photography he did take a photo of the happy couple when they were signing the register. He forgot to disable his flash gun and with me looking directly at his lens he popped a bright flash. Certainly he was deeply apologetic but the damage was done, I suffered from impaired sight for about half an hour and my eye watered for half an hour more.

Andre

[rosemary johnson]

No need to apologise, Andrew ...... it all seems to be an area where there is a lot of "don't know why; it just is" about.
SOrry to hear about the wedding and the photographer - and all too common experience of photographers, I fear. I won't quite say I'm glad I'm not the only one to have porblems with flashguns, because of course I'm not glad to hear you do too. YOu know what I mean, though (I hope!)
SUrprise surprise - the person at the hospital who was supposed to ring me back today didn't. I suppose I@ll have to chase again tomorrow. In between posting my t*x r*t*rn and going tothe TOwn Hall.
Rosemary

[Hilary Johnson]

Hi

You said:

ANyone got any ideas how to word a question to my new consultant about "why was I offered a graft and do you think it was a sensible suggestion?"

Is this really a question, or just rhetorical?? If it was meant to be rhetorical, please skip over the next bit.

I don't quite get the question - I mean, I don't quite get what the problem is. What's wrong with "Why was I offered a graft and do you think it was a sensible suggestion?" ? Maybe that's what you said and it didn't work....? If I read your story right, you were offerred a graft because of the bad state of your corneas, to try to improve your eyesight, and by someone who had heard a fraction of the story about light sensitivity and may have though it would help that too, and even if it didn't he'd still be doing you a favour.

You also said "I'm just hyper-sensitive. Oh, very helpful!"
I reckon if you delete the word "just" it could be helpful, because there might be help and advice available to people with hypersensitivity. Have you ever come across a book called "the Highly Sensitive Person" by, I think, Elaine Aaron? I read it once and decided that, although I have some of the light and sound sensitivies she describes, it is really talking about something far more serious than I have ever experienced - but maybe you might identify more with it. And it does give advice on how to deal with it, though I've forgotten what, except that I think that's where I read the advice about getting yourself accustomed to bright lights, not trying to avoid them. She also talks about being more than usually prone to allergies and drug side-effects, again if I remember rightly.

I look forward to hearing how someone comes to have received a complaint you didn't send, though my money would be on - someone forward to them the email you sent ages ago, and the date quoted was the date that someone forwarded not the date you originally sent it. I hope the issue of how they came to receive it doesn't make them overlook the original complaint!!

Hilary

[rosemary johnson]

Hi H! - how is life in weatherful Yorkshire?
No, that wasn't a rhetorical question - and you may be right about the direct simple question being the best. (The obvious answer, unfortunately, would be "I have no idea because I never saw your eye before the graft" - which brings in the part about, I was actually offered grafts in either or both and they were much of a muchness and you've seen the one that still is mine.) Oh, and the probable tendency of surgeons to close ranks....
As regards the "just" in "I'm just hypersensitive" - I mean, I just am, there's no particlar reason (as distinct from, I'm hyper-lightsensitive because of xyz, which we may or may not be able to do anything about).
The reason it's unhelpful is because I've known for years that I'm hyper-light sensitive - so nothing new there, then. Indeed, I've spent another half a day in a hospital (as if I didn't have better, or better-paid, things to do), had my neck put out again, spent a week climbing the walls in pain from put-out neck, and got yet another chiropractor's bill for putting the neck back in again! - not that I begrudge the chiropractor, as he does a good job, but he shouldn't have had to have that job to do.
And all for nothing new that I didn't know for years.
BTW, I still haven't had the report fromt he eye-neurologists - let alone any feedback on my message about putting my neck out - and "sorry" would be nice, at least!
Yet another phone call to chase that up; or several......
As for the mystery complaint...... apparently, te friend-of-a-friend to whom I sent a private email passed it all on, and in double-quick time, to various people including complaints manager. And That Certain Surgeon has had passed on to him to investigate why his deputy was trying to make me sign a consent form and not allow me time toread it first. I set very little hope of THAT, I have to say. I've said as that's in hand they may as well let it take its ourse and I'll write properly about the rest.
I await to hear anything at all further.....
Moral of this is, methinks, not to trust any friends-of-friends to keep preivate what you thought was a private email!
R

[rosemary johnson]

latest update.... now I can actually post to the forums again; been having technical problems of late.
And thanks to John for sorting them out, as it seems to work OK again now.
Last Monday (27th) - tried to put new lens into grafted eye again. First time since the first day I went to A&E with world going cloudly back in August, and they discovered IOP of 36. Felt rather odd, and a bit uncomfortable at first, but not too bad.
Wednesday (29th) - contact lens appointment. Graft and eye its in apparently look OK; other eye looks as ever. Lens fits well clear over graft.
But very sore and very glad when it's been looked at and I can take it out!
Pressure still 25 in grafted eye, 16 in my own eye, which is creeping up slightly (previous times were 13, before that 12) so suspicions about asthma inhalers still suspicious. Measured with white light, rather than blue light and orange dye - lack of "topical" anaesthetic drop not a problem, but the brightness of the whit elight definitely is!
Meanwhile.... my notes have gone missing! - and no-one seems to know who might have them, though could give a shortlist.
Went round to Refraction to be tested for glasses prescription... and slotted in there and then rather than had appointmnet made in due course.
Mistake - by then very sore eye and headachey. Worse after having light shone in eye from magic torch gadget.
Seemed to be spending ages with only marginal differences to blurred view only about half way down Snellen chart. Said this was disappointing, then she tried something else and could enarly read sencond line up.
Various things puzzle me:
- why was young lady flatly refusing to tell me the numbers she was coming up with, despite me asking directly FIVE times????
- why (when finally got sight of them) is the Cylinder reading getting smaller (this is measure of astigmatism) when I'm getting markedly more astigmatic? - that is, the lines going about North-by-east to south-by-west (Runway 01/19 in aviation speak) are in focus the furthest distance from my eye (just over 6") and the lines going East by south to west by north in focus at th cloest distance (Runway 1/28)
....... when the distance at which the nearly-horizontal is in focus is staying the same, and the distance to the nearly vertical lines is getting bigger all the time (and reading getting harder and harder) why do the numbers say the astigmatism is getting less?????
- why, given the directions mentioned above, do the results come with an "axis" reading of 165? - rather than 190? Where is it measured from?
Maybe Lynn knows and can explain???
They are trying to get me to get glasses and eventually gave me a prescription - I said "Well it can't hurt, I suppose" and said I'd think about it - though don't expect to get them made up.
Numbers, for the record: Sphere -6.5, Cylinder -3, Axis.
The previous time (April, IIRR) came out as -9 on one axis and -14 on the other which translates to sphere -9, cylinder -5 and we know not what axis as the notes ahve gone missing, but to me looking out, the angles haven't changed.
Suppose I might get round to going to ASDA and asking the optician franchise in the store how much the things would cost, though can't see it happening. Not for this THING that is such anathema anyway....... and for which I only just ofrked out for a new lens, ha ha! And where do I get the money at the moment for one unexpected pair of specs, let alone THREE? - she's given different prescriptions for distance and reading - and where I really need distance vision on that side is riding Due out on the road so I can see the traffic - and that will be a "sunglasses" pair with a polarising coating, as I can't get specs, polarising over-specs and jockey helmet on all at once..........!!
By now had very sore eye and splitting headache and am wondering if I wasn't able to tell too clearly in the circumstances when the horizontals were in focus or not - being so used to seeing up-and-down multiple images with the KC, I don't notice them that much....
Hastened round to cafe, got cup of tea and glass of water and sat down to dig out supplies of Neurofen... and had guards trying to chase me out cos they were closing. Where does the afternoon go one you set foot in a hospital??!
Thursday morning: went to see GP. See also the "Dr........ who?" thread.
He professed to have no knowledge of having received a letter from my nice (?) friendly (??) anaesthetist in the middle of August asking him, inter alia, to refer me to one of the following.......
I explained Ruth (asthma nurse_ had found it on the computer, and apparently it had arrived when he (GP) was on leave, and one of his colleagues had opened it, put it on the computer and made a note I was to be sent a letter asking me to come and discuss it - which never happened.
Showed him the copy Ruth had printed out, and he found it and the note about writing to me. He still claimed no knowledge - whether he'd also overlooked the messages on his computer about nice friendly anaesthetist trying to contact him for a progress report I know not!
Also took him a copy of the bits of the emails to said nice friendly anaesthetist where I actually said what I wanted to be referred to someone about - why my balance and memory are still shot up - and said I thought there may be some confusing ging on here, and suggested he sent these bits to person with referral and asked for confirmation they are the right person to deal with this.
He's supposed to be doing this - I await developments with interest and not much immediate anticipation. Haven't heard a peep since, needless to say.
Friday - went out tramping streets early with left lens in, came back and took it out as eye so sore from all the overwork. Had riding lesson booked pm (to practice for next dressage comp) so put new lens into grafted eye again.
very surreal riding - felt I could see every grain of sand in the artificial surface ont he indoor arena, and great difficulty reading diary to book next session.
Came home, put up "No trick or treat" signs (!!), got cup of tea, sorted out paperwork from the morning, then sat down to read emails, forum etc.
Looked up from slow-moving KC forum (!!) and saw that light bulb had round it, not a misty cloud with a rainbow edge, but a huge bright rainbow halo cloud.
Took lens out in great hurry!
Eye feeling sore for next several days. Keep waking up in the middle of the night with it feeling dry and sandy and most of my face feeling dehydrated and gritty.
Very fed up, and tired from lack of sleep.
Eye now back to its "normal" level of constant background ache and permanent redness.
I do sooooooooo wish it would just stop hurting and I could forget it and get on with the rest of life!!!!!!
Monday: letter arrived from That Hospital.
Oh good! - is this the neurology report? - something from the complaints guy about the complaint I didn't make?
Nope - it's an appointment to see That Certain Surgeon. Needless to say, I shan't be doing any such thing.
If this weren't real, it might be very funny......
Rosemary

[jamesar]

OH ROSEMARY! You are scaring the hell out of me, starting to think whether I should get this graft

[rosemary johnson]

Hi James!

Please do not panic yet!!!

I think it is very salutary for both people with KC and their medical practitioners to reflect that there are risks to transplant ops other than simply to the graft itself (rejection, infection, etc).
However, what happened to me is (I gather!) very rare, unusual, etc.
In my case, it would seem that i had sensitised myself to steroids by going on and off different types of steroid-based asthma inhaler over the years, so when they gave me a hefty dose of steroid during the op, my already-sensitive metabolism went into overdrive. And is now extremely hypersensitive as a result.
Add to this the unfortunate facts that I had a neck injury in an accident at work a few years ago which has left my neck vulnerable to being "put out" again, and to getting nerves/bloodvessels trapped when it does, and the fact that I am prone to dehydrate quicly and badly, and you have what in my case proved a recipe for disaster, but is a pretty unusual combination of factors.
Getting high eye pressure after a graft is a well-known risk - one thing that can cause it is actually the steroid eye drops they give you to prevent rejection of the transplanted tissue, and now I'm extra-hypersensitive to steroids, it's not impossible I'm especially at risk of it. Alternatively, it may be a side-effect of the new asthma inhalers......
...... because, now I@m so steroid-sensitive, I've had to change the asthma inhalers and use (mainly) non-steroid ones; the high eye pressure seems to date from roughly the same time and my blood pressure is up too.
The soreness is mainly from the anti-glaucoma (ie. eye pressure reducing) drops - which are themselves the "third choice" as first and second choices don't mix with the asthma.
I feel like a piece of lumpy wallpaper! - push one bubble down and three more pop up elsewhere!!!!
And unfortunately for me, there are likely to be health implications for me for years to come.
But my combination of risk factors is ... well, very unusual, at least..... so the chances of the same happened to anyone else are, well, small I hope!
Though I would say, anyone who has any history of bad reactions to steroids - any steroids - might like to think twice, three.... times before agreeing to have an eye operation under general anaesthetic, and certainly discuss the matter with the surgeon and anaesthetist(s).
Rosemary

[Andrew MacLean]

Rosemary is right to keep us informed of some practical consequences of the pitfalls of treatment; the truth is that there are risks involved in having treatment and risks involved in not having it!

Before I had each of my grafts, my ophthalmologist explained the risks that were involved in surgery and the possible benefits. I had already lost my sight by delaying surgery, so I knew that taking no action had also had associated risks

For those who are waiting to go through surgical interventions (including CXL and INTACS), it is right that you ask questions about associated hazards so that if you do consent to the procedure you will do so on the basis of good information.

Set against Rosemary's negative experience the others who post here whose outcomes have been far more positive and then remember that Rosemary is still in the relatively early stages of recovery (it took me a little over two years to recover the sight in my right eye and my left eye is only now beginning to see clearly). It may be that Rosemary also will have a good outcome in both the middle and long term.

Time will tell. In the meantime others will be going through the stages of listening to advice and making decisions.

Andrew

[rosemary johnson]

Just over 9 months, actually, Andrew.
I am hoping that, once I can get off regular steroids, the sensitivity will fade a bit.
I did have a period (after the previous neck injury) of being hypersensitivsed to adrenaline - the sort I produced myself, I mean - so any little thing and I'd jump out of my skin. That did fade out eventually ..... about 18 months, maybe a bit more.
I'm just hoping the remaining "bad trips" are from (enfogenous) adrenaline, and will eventually fade.
Well, I can live in hope......!
Rosemary