Latest in saga of disastrous graft op

[rosemary johnson]

I know about professional liability insurance - complementary therapists have it too (or jolly well shouldhave) and the requirement not to admit liability is the same.
But I'm not sure what you're saying - the person who'd have to certify the brain function damage problems would be the neurologist (presumably!) I've been trying to get to see since 1st Feb, not one of the ones who caused the problem.
Though one does hear rumours of medics closing ranks and not admitting any of their colleagues could have done anything wrong....

Incidentally, it occurs to me that the other person I might benefit from talking to would be someone who knows about steroid hypersensitivies and how to measure and, if possible, reduce them. Though as I don't have a great record with anti-histamines, I wouldn't have much hope of damping the reaction down.
Rosemary

[Hilary Johnson]

Hi

Yes, I'm sitting reasonably comfortably, and yes I did ask.
Bit lost for a reply though.

The memory problems may get better over time. I said a few posts ago that I went through a phase of being hopeless with names after a couple of operations. Did I also tell you that I once went through a phase of being totally unable to remember things I used to know after I had chicken-pox? But I seem to be back to normal now.
Are there any memory training exercises or memory tricks that might help? Do you know what, if anything, can be done to help people recover from the sort of brain damage that happens in a stroke?

If you seriously want to sue doctors I'd suggest you get legal advice first. Do you have any sort of legal assistance service as part of your house insurance? Or try one of those ambulance-chasers who advertise "no win no fee" in Yellow Pages, but I'd warn you that they tend only to take on cases that are clear-cut with a good chance of winning, so they may shy away from something this complicated. If a lawyer is willing to take the case on, they will have their own tame medical experts that can certify what damage has been done.

H

[rosemary johnson]

Hi H.
Yes, you did tell me about the post-chicken pox experience - for how long did that last? I don't remember anything of the sort after I had shingles, but was feeling so woozy on the acyclovir I was probably forgetting all sorts of things.
I feear that "Oh, lots of people have that after operations, and it gets better after a little while" is the osrt of patronising put-down I'm probably fighting all the way. However: 1. it is nearly a year ago now and shows no sign of wearing off and 2. it is exactly the same but worse as the step change that happened after that neck injury thing at work. That was in 1999, and never wore off, so why should this??!
As regards being hopeless with names - yes, I'm always hopeless with names, in the sense of, for example, sitting up a church tower on bell ringing practice night and whispering to my neighbour ("TIm, what's the name of the woman ringing the treble?" This is different - if you like, it's name I know as "concepts" (like peristalsis or Parkinson's disease, or Maggie's chancellors) rather than not fitting the name to the face in front of me.
I suspect that any "improvement" is a matter of letting the brain acclimitise to trying to carry out functions that no longer function in a different way.
Memory training things I've heard about tend to be ways of storing info with aide-memoires - and typically based on a visual paradigm which isn't how my brain works. You've probably head of the one about, if you have two things to remember, make a mental picture of them in somethiing that rhymes with two - walking round in shoes, for example. 2 things, in trees, 1 thing, being fired out of a gun.... Fine if it works for you, nothing to do with things you know well and have known for years and which suddenly won't come back.
Incidentally, the theory is that that is how tarot cards originated - the stragne pictures/symbols were the odd pictures invented to help remember 2 of those, 3 of these... etc. And the tarot pack is left with the deriviatives of the odd memory-aiding pictures but not (necessarily) the things they were trying to remember.
Am currently totally blocked up with catarrh from rotten cold - great way to start the new year! - and off to bed again very soon.
Really dreading hospital appointments on Wednesday! - and been lying awake with cough, temperature, and having bad trips again - I think it's the result of whatever steroid it is gets produced in reaction to soreness and inflammation of airways. Think I'm going to have to start asking questions about whether there is a way to damp down the steroid sensitivity.
Rosemary

[rosemary johnson]

Well!
Got back from the eye hospital at 10 to 9 this evening (admittedly, did stop from samosas en route and go the pretty way rather than the fastest way).
So quite glad didn't persuade a friend to come with me.
The good news.
It isn't rejecting and I can stop using the dexa eye drops (hoorah!)
The new contact lens in it apparenlty looks fine and the vision with the lens in is about what it was last time still (about half the bottom line with a following wind)
Pressure down to 20 in grafted eye, and 14 in other one; glaucoma guy (John) seems quite pleased! Opticnerve looks fine; I can give up one of the anti-glaucoma drops.
New corneal consultant, asked about when the stitches can come out, reckoned about 6 months - and later maybe it might be next appointment (May). I'm counting the days.
The bad news:
Spend most of last night awake and trying to fend of the "bad trips", feeling feverish and trying not to cough so much I kept the neighbours awake. This has been going on for, oh, a week or so. I reckon it is because I've been so sensitised to steroids that the steroid hormone my own metabolism produces in response to having an totally inflamed respiratory tract is enough to set the hallucinations off again. In which case.... will this ever fade, or will this be liekly to happen again any time I get a cold, flu, cracked ri, whatever? - I really do not want to spend the rest of my life prone to having this stuff set off again by my own steroid hormones!
Totally rotten this morning. Just wanted to go back to bed and cry. Almost rang the hsopital several times to say I was too fluey to come in,a nd could we postpone - but then would have sa dread of going there next time too....
Put new contact lens in before setting out. Had to remember which it was (nearly put wrong one in). Didn't feel at all comfortable when I first put it in, never really happy all the time - maybe lurgy is to blame? (How cons. says grafted eye is not inflamed when it feels like half chest and lal of head is, I know not!)
Adter seeing first two, went out for walk round block before going to glaucoma clinic to get some air and cool off (very very hot and dry and stuffy in hospital) and could see big rainbow haloes round the street lights. Lens been in not yet three hours by then. Huge and very vivid rainbow round light of John's slit lamp.
Seems only hlaf my notes are in the notes folder - various occasions I've been in and they haven't had the right folder and used pink "temporary" ones - not all those have got added to the main one. Very confusing!
Arrived and sat in waiting room feeling rotten, trying to keep hallucinations at bay and not cry..... nearly first thing I saw in practitioner cubicle was one of those surgical gown things - "silly nightie", you know. Freaked! - those thigns ahve featured in so many of the "bad trips"....
The as-ever super-enthusiastic Ken worried....... dunno what he said to New COnsultant, but after break to get more tea from Cafe, got called in by nurse practitioner wanting to know if I was all right cos they were worried about me - said NO I wasn't, tried to explain situation (she's new). Could sense her wondering whether she shouldn't be telling me not to jump off any bridges/under trains etc in case it reinforced the idea. ANy other time, might have been funny!
News consultant totally flummoxed to be asked, taking as read this THING is such total anathema, what are my options for getting it removed? - not that I was expecting any answer other than "none".
TOld them I did not want them either to send me to a counsellor nor to contact my GP about..... and said "Am Changing GP" and got old address corssed out. I HOPE!!!! this will register. Did not give new address.
Worst news:
Glaucoma clinic is evening fixture, goes on till 8 (my apptmt a 5). Cafe shuts at 5 so no more tea dna sandwiches, cake, etc. What's more, the cold water drinking fountain thing is inside the cafe, so once they shut the cafe, no more drinking water. It is hot, dry, stuffy, horrible and I'm running a temperature of I know not what......
Still not sure whether I wish I had rung to say I was too fluey to come and could they postpone, or not. Walking home from tube with coat flapping open trying to cool off a bit. NOw very shivery again. Not so good.
Bottom line is still: I wish the wretching THING would just stop hurting, so I could forget about it and try to pick up (what's left of) the rest of my life.
SLightly better news for today - probably most hopeful thing all week: got home to find two messages from LEsley who owns Duke. The new farrier has been, inspected his feet and suggested new treatment strategy - including getting him out and moving about on them as much as possible, to keep blood supply through the feet going to maximum. And he can go and run orund the field with his mates..... so he should be a lot less fed up. I can see though that if I follow the instructions and get him doing a lot of trotting round the roads with my weight on, he is going to be very very sweaty in his thick fluffy winter coat!
NOw I just have to feel well enough to ride him - felt really dizzy today, just walking up the road to the tube station. Probably combination of head stuffed full of catarrh and "surreal" look out of new lens.
Back to The Place in April to glaucoma clinic, May to the others..... so looking forward to darkening their dorrs again - NOT!!
Roseamry

[Hilary Johnson]

Rosemary

O.M.G.

I don't see how you can go on like this.

If you freaked out at the sight of a hospital gown, then there MUST BE a psychological component to all this. You refuse to see a counsellor, so what ARE you going to do? PLEASE, have some common sense and self-respect and, if you can't help yourself, get help from someone - doctor, counsellor, alternative practitioner, whatever you prefer.

And PLEASE - You clearly can't avoid them, so DO SOMETHING that will help you CONTROL the "bad trip" symptoms- drugs, therapy, alternative treatment, self-help, whatever, before you lose control of your life completely.

Hilary

[rosemary johnson]

Calm down, H - I'm still here!
I'm going to ask someone - not sure who's best, but will enquire - about whether there is a way of "damping down" steroid sensitivity - or even, of damping down endogenous steroid production. Like an equivalent of anti-histamines. Am not over hopeful, but will investigate.
AM also not going to book all three appointments onthe same day again - thin it's too stressful (particularly with the lurgy! - and will do my est to get someone to go with me next time.
Meanwhile.....
I have no idea what the people in the hospital, particularly nice nurse practitioner who seemed worried I might "self-harm", would say if they knew what I@d been doing this moring - going round to B&Q to buy a chain saw!!! - nor, for that matter, That Certain Surgeon!!!!
(DOn't ask... oh, OK, do: the field where DUke and his mates live used to be leased by the garden centre next door to bring on their your rose bushes - and is still dotted with roses as a result. Also hathorn, blackthorns..... all with prickles that tear the horses' rugs, and leave scratches on the horses and the humans. Yard manager is on programme of gradually cutting them down in interests of less injuries/repair bills. SO I met him an dchief groom there, helped choose chain asaw for the job, and got lift out to see Duke. Chaotic day!)
On which subject, it also occurs to me that maybe I should have mentioned to the hospital people that all the scraches on my right forearm are nothing to do with Stanley knives or "dark urges" but came from an argument with a bramble bush - or to be strictly accurate, an argument with DUke about whether he was going to stand and eat all the leaves off the bramble or whether he was going to come and stand still beside the mounting block while I climbed aboard. (I won the argument with Duke and the bramble had the last laugh!)
I'm hoping, now I've stopped the steroid eye drops, that will help let the hypersensitivity fade out ( was super-sensitive to adrenaline for yonks after the neck injury, but that faded eventually back to "normal"). Also, that in winter without the hay fever, the asthma will stay under decent control with only a (small, part-) steroid puff now and then.
But severely worried if any nasty lurgy/injury/return of hay fever (!) might bring this back.
ALso immensely relieved consultant seems hapy to take out stitches at suitable time - and was so chilled about telling me to stop the dexa. Though might have to have a, ah, full and frank discussion, about both.
Off to have hot bath now, then get to bed early, and try to catch up on sleep. Fed up with this lurgy. Twice today was going round Duke's feet picked out "stuff", scrubbing them with saline, and applying hoof-care lotion, and both times stood up again after and thought I'd die of the choughing and spluttering fit. (OK, OK, I'm axaggerating a bit..... !)
I'm also living in hope that after next apptmt will be able to give up the last of the anti-glaucoma drops - and then, I hlive in hope, will be able to shake off what I gather from the notes is apparently medication =0induced blepharitis - right eyelid permanently sore and itchy and feels 3 sizes too big, in other words.
Rosemary

[pepepepe]

Very descriptive Rosemary, A lot of things there which bring back memories, like visiting moorfields, the cafe there, not feeling too good at the visit etc. Its good to know its not that different for others

[rosemary johnson]

Glad I'm not the only one who doesn't find hospital appointments a whole lotta laughs, pepe!
Today's news: well, theory of reaction to endogenous steroids, probably cortisone, boosted as waking up this morning and getting the effects still - so definitely not all down to stress of imminent appointments.
Dragged out of bed, fortunately, by maintenance bloke sent (I presume_ by landlord of upstairs flat come to see about leaking pipe, and wanting to get into my garden to see where the drips were coming down.
Coming to fix it tomorrow - very good news!

Bad news is now I@ve stopped the dexa, a back to the state of the first few weeks on the anti-glaucoma drops - eyes red and sore and feel horrible as reaction and no steroid drops to reduce redness etc. Will give it a few days then try to contact John, I think.....
Went round to pharmacy and had chat to pharmacist - occurred to me to ask if there were in existence that she knew of any medications that might damp down over reaction to steroids (endogenous ones, that is); or to reduce production of them. She doesn't know of the former, but the latter exist, apparently - because of something called Addison's disease, which is where the adrenal glands (on the kidneys) go wrong and start producing too many of several/various corticosteroids. WHich would be the remit of an endocrinology specialist. Off to look this all up, nd will (dependingon results) have to mention this to someone.
She also said being on steroids can make bones thinner and more liable to crack - this is very bad news if get this effect from overreacting to steroids - appart from a risk of falling off horses and breaking something anyway, we have osteoporosis running inthe family and do NOT want to have it made worse.
Rosemary

[pepepepe]

Please ask about calcium supplements, in if they may help with strengthening bones to over come this, I'm not sure what they will say either way but ask, you may get a pleasant surprise !

[rosemary johnson]

Cheers, Pepe - I'm certainly going to mention concern over steroids and bone loss, gven we have osteoporosis in family. I'd be surprised if the quantity of steroids in eye drops is enough to have a major effect - but you never know. I rather suspect, though, nad in view of how much cheese I eat (!), they'll probably say what I need to be doing is more "load-bearing" exercise to help the calcium get taken up into the bones. Like carrying loads of hay, oats, water buckets, not to mention wheelbarrow loads of ahh, waste tothe muck heap when I'm at the stables ,no doubt And this morning on the way tot he chiropractor's I saw the year's first bit of ragwort!
Rosemary