Update of disaster graft saga

[rosemary johnson]

Tried to post this yesterday, but compute seized up on me.
The good news:
had appointment in glaucoma clinic yesterday. The IOP (eye pressure) is 10 in my own eye, between 10 and 12 in grafted eye, ie well within normal limits.
The optic disc looks fine.
I can give up the lumigan drops - he reckons it normally takes 4-6 weeks for them to work completely out of the system, but am hoping as it does, the eye will stop the itching and red soreness and swollen spotty eyelids. Also, its adverse effect on my asthma will wear off (with hayfever season coming on, will e very glad of less aggravation to the asthma!)
Come back in 4 months.
Met up with an old friend for tea/cake/chat onthe way home, which was good.
Elsewhere, I have been talking to new GP's practice manager again. She is chasing up the MRI scan and endocrinology referral, and has no problem with sending me copies of referral letters. We are putting previous hiatus about that down to a breakdown in communications.
She's going to get back to me about progress on MRI/endo - has occurred to me to offer to draft the referral letter myself and cut out a stage of CHinese whispers. May be novel approach for them, but may be worth a try.......!
She also says she's got a copy of the letter I sent to old GP's deputy practice manager about dupes/missing bits from copies of my notes there and about errors that need correcting, but not yet got the notes themselves.
Phew!!! onthe latter bit; also she knows there is an issue and has promised to contact me as soon as they arrive so that can be sorted out.
The less good news:
got bitten by some black flying biting thing at stables last week, had swelling 6" across or more despite freeze-gel, and set off lots of the Cushings, and Addison's, symptoms again - including nightmares and one set of hallucinations. Very very fed up with this.
really worrying news is that one of Duke's infected back hooves has been taking a turn for the worse again. Apparently it was better today when I went to clean and apply treatment to it - very soft and manky-feeling, but not exuding black pus like yesterday.
also:
usual glaucoma consultant away on holiday (lucky man!!) and guy I saw instead clearly didn't know all the background. Was saying things about what a lovely graft it was..... say How Galling!! and DOn't Say THat! to little effect. I wish people wouldn't keep telling me things like that. I really, really really don't want to know that - indeed can think of nothing more likely to make me inclined to stick the Swiss Army knife straight through the wretched thing!!!!!!!
it hit me late last night - felt really really distressed about it all again, so wished hed kept his mouth shut. Lay in bed trying to finish "difficult" sudokus and then didn't sleep.
But better now, though took much of the day and working two mini-Shetlands. And chocolate intake.
Does no-one at that place understand that when an op's gone totally pear-shaped, the last thing you wnat to know is what a neat piece of surgery you've got?!
Rosemary

[Barbara Davis]

Depends on how you look at it, I suppose. I sympathise with all you have been through since the surgery, but there is another, more constructive, way of looking at it. The surgery itself was not actually the problem: the problem was that you went into it with a very rare, difficult to spot and potentially life-threatening underlying biochemical disorder which you managed to identify because of the surgery. Unless you had had that op - and all the horrendous repercussions from it - you might still not know the underlying problem.

[rosemary johnson]

Eh?
WHat are you talking about?
I think you've misunderstood something.
The problems I now have were created by the operation - or more accurately, by being coerced by a surgeon who only cared about am 8mm cirlce of someone else's eye and not about me, into a general anaesthetic I didn't believe was safe, when I was too ill with dehydration to be in a legall competant frame of mind.
I may have developed a certain steroid sensitivity in advance - it was being gicen a dangerously high (for me) dose of intravenous steroids that has left me with the problems.
If they'd done this op under local, and without intravenous steroids, I don't believe the eye drops would have been enough to start off the shock reaction, and I wouldn't now have any of the problems.
Far from being an "underlying problem that has come to light", it's a problem that would never have existed if I'd stuck to my guns about a GA being dangerous and walked out. Or dug my heels in and insisted tothe surgeon.
And I still cannot believe I was so, so, so unbelievably and unbearably stupid as to let myself get coerced into it, however non-compos mentis I was, and will also blame myself for that unbearable stupidity.
Or what else were you talking about?
Rosemary

[Barbara Davis]

I am talking about the fact that it is unlikely you developed Cushings solely as a result of your op. To have reacted to steroids during your surgery in the way you did, you probably already had Cushings as a consequence of all the steroids you have been prescribed over many years. Had you not had a bad reaction to the surgery you may not have discovered that as quickly as you did, since Cushings is something which can often go undiagnosed for many years until it presents as an emergency which I have seen result in amputation and heart failure - and can potentially even lead to death.

I know horrendous things, outside your control, have happened to you. And a good deal will continue, I suspect, to be horrendous. But, without denying any of the negatives, I'm trying to suggest at least one positive aspect. It's up to you whether you use it, as I hope you will, to try to help yourself feel just a little better during those miserable sleepless nights you have been describing. Maybe it will help, maybe it won't - but I'm trying to offer something constructive. You wouldn't look a gift horse in the mouth, would you <smile>?

[rosemary johnson]

Clearly I haven't been explaining this clearly.....
I think I may have become slightly sensitive to steroids as a result of going on and off the brown asthma inhalers over the years.
I certianly had nothing remotely like the hypersensitivity reaction I now have - where I get Cushings syndrome symptoms off a natural rise in my own endogenous corticosteroid levels.
The current hypersensitivity has been caused by the shock reaction to the intravenous dose during the op. Without the op - or strcitly, without the gneral anaesthetic - I certainly wouldn't have been that hypersensitised.
I can see absolutely nothing positive at all to take out of that!!!
it is just about possible I may have got slowly and gradually more steroid sensitive over teh years without the effect of the op - or I might not; who knows? Even if I had, I'm sure it would have taken quite a few more years.
it is just possible I amy have developed a similar hypersensitivity reaction - with nasty shock reaction - if anyone had given me a hefty dose of intravenous steroids for any other reason. OTOH, I might never in my life have "needed" one.
Rosemary

[Barbara Davis]

I think it must be me not explaining things clearly

It is believed that Cushings usually stems from *prolonged* exposure to high levels of cortisol, which in turn generally arises from a tumour or from taking steroids over a long period. The key word is prolonged: I'm not saying it cannot arise from one incident but that is not the normal route. For example, see http://endocrine.niddk.nih.gov/pubs/cus ... shings.htm - many articles leave out the word "usually" but I'm erring on the side of caution here.

I've seen Cushings in action and know that it can be symptom free for years until it causes a catastrophic disaster. In your case you even have evidence that there was already something wrong before your op - e.g. in your reaction to dental anaesthetics. Not everyone even has that.

I'm not talking certainties here, but the evidence suggests that your surgery triggered a crisis in an serious existing illness rather than causing the illness in the first place. Had you not had the surgery, your sensitivity to steroids may have continued to develop - as it does in Cushings - without a dramatic incident, not least because you normally tried to avoid things which caused you special problems like dental anaesthetics. For all the horror of your surgery and its consequences, which I do not doubt, I believe that at least it may have highlighted a potentially serious problem which could have had even more serious consequences had you not discovered it.

I do understand what you are trying to say, and I agree that your eye drops alone would probably not have triggered the reaction you had. But that's not the point I'm trying to make. The point is that, despite that, you probably already had Cushings - if that is indeed what you have now, which seems likely. Cushings grows silently for many years until it is discovered, like cancer, and it does not stop growing just because you avoid anything which may bring it to your attention. Yes, your op gave you the problems you have now: I have not claimed otherwise. What I'm saying it that those problems you have now seem to have uncovered something underlying which could be even more serious, and which usually continues to get more and more serious even without a major trauma like your surgery. Yes, it may have taken several years longer to show up, but by then the irreversible damage done to your body may have been massive.

[rosemary johnson]

At risk of digressing quite a bit......
I don't believe I have Cushing's *disease*. That is, I dn't believe I'm actually producing too much steroid hormone (cortisol or any other sort) - indeed, the blood tests show the levels to be fine.
That is, I don't think my pituitary is producing too much ACTH (the signal to produce steroid hormones), eithe rbecause it is on the blink or because something like cancer elsewhere is giving it the wrong signals.
Even when I had the strange adrenaline reactions a few years ago, the tests showed my levels of adrenaline production to be all normal.
I think it's all a hypersensitivity reaction - so I react with Cushing's-like symptoms when in contact with more glucocorticosteroids than "normal" - whether a new type of eye drops, or starting up arthma inhalers again witht he arrival of the hay fever season, or getting the flu (which pushes up the endogenous levels naturally).
- the current levels of hypersensitivty caused by a sudden huge dose, intravenously, causeing a nasty shock reaction.
In the same way, my asthma was never half so bad, and I'd never noticed any particular problems with chemical solvent allergies, till I bought a new bike, took it back tot he shop to complain about it being stiff and badly adjusted and some not-very-knowledgeable kid in the bike shop sprayed it all over with LPS3, which actually achieved precious little, and I took it home, propped it up in the corner of my bedsit where the fumes spread inthe sun, and when I cam ehome to bed I nearly died. Seriously... my flat mate had to come and drag me out of bed and sit me up inthe garden till I cold breath again. Fortunatley I woke her up coughing and choking.
Had volatime chemcial sovent allergy problems ever since - and I gather it is far from unknown to be sensitised by some exposure inthat way.
Rosemary

[Barbara Davis]

Fair enough. Cushings is certainly rare.

But then I wasn't offering a diagnosis but trying to offer you a positive thought, one based on realistic facts rather than wishy washy optimism. You don't have any choice but to endure the horrible situation you are in. But you do have a choice as to whether you accept or reject a positive way of looking at it. Even if the chance I'm right is only 1%, there *could* still be a benefit in the situation if you choose to look at it that way. And even if the name clinicians would give your steroid sensitivity is not Cushings (medicine is, after all, far more empirical and arbitrary than most people imagine) it is still a potential problem, and you can only guess how it might progress. Getting it dealt with now might easily be in your best interests no matter what the problem actually is.

Take care.

[rosemary johnson]

Sorry; can't see anything positive in this whole sorry mess.
SOrry again: terminology:
Cushing's disease = pituitary on the blink, secretes too much of a hormone called ACTH which tells adrenal glands to make too many corticosteroid hormones
Cushing's syndrome = something else in your body wrong, resulting in over-production of corticosteroid hormones. COuld be adrenal glands onthe blink or several other thing.
Iatrogenic Cushing's syndrome = doctors prescribe corticosteroid medication, results in same symptoms as above.
Inital several months of weakness, exhaustion, high BP, etc etc no doubt the latter.
I've also heard mention of "pseudo-Cushing's" - maybe that's the term they'd use for what I'm getting as hypersensitivity reaction.
Was onthe phone to new GP's practice maanger chasing up endocrinologist referral last week; she's supposed to be ringing me back, and will cahse again if don't hear soon. HAve been at Plumpton races today feeling drained and exhausted and with fast thudding heart, so am not going to forget this!
Also had sudden stabbing pain in grafted eye - think getting dried out as still getting used to being without anti-glaucoma drops. Not what I wanted.
Don't think I jabbed eye with binoculars eyepiece in heat of tight finish!!
WOre off after a while - if was a very dry day - but for a while thought I'd be straight off to A&E ont he way home, sigh!
Rosemary

[Barbara Davis]

What is positive is that, if you do have Cushings, discovering it now may have saved you from an amputated limb or even death.