Good luck to Rosemary

[rosemary johnson]

Hi.
Quick update.
Had hospital appointment yesterday. Got message to expect phone call before going for appt, so expected it would be changed, but nothing.
No news of anything different at clinic reception either, though apparently I am being moved to the "tender care" of a new consultant.
Rather dismayed by how shakey it made me feel walking backinto That Hospital again, and how panicky it made me, seeing That Consultant walking along the corridor behind partition talking to someone else - panicky lest the violent hallucinations flooded back in and I couldn't hold them in check.
Relax! I didn't actually strangle anyone.
The previous day I had had a long conversation with A Certain Doctor, who had various interesting ideas about what might have happened, trigger factors, etc - but definite lack of information.
As I had an appointment at the hospital next day, agreed I'd ask.
Would you be-adam'n'eve it??? - the refuse to tell me! I mean, this is factual info such as which drugs they used on me, was I experiencing low blood oxygen (I wouldn't have known to ask that), abnormal BP etc.
Aparently, this info is not in my notes - really???? - so couldn't just be read out.
Apparently, I have to go back to the doctor's and ask for a formal letter from my GP to be written to my consultant to request the information.
Is this really just a bureaucratic nightmare, or something fishy going on???!!
Technically, of course, it's a bit hard for my poor GP to write to my consultant as I don't have at the moment.
in the midst of all this, mobile phone started ringing. Thought it might be from the somewhere On High supposedly arranging change of consultant - so better answer it, in case I was supposed to be at a different appointmnet somewhere else.
Turned out to be a double glazing salesperson! Can't be many d.g.s.p.s whose opening patter is greated with gales of near-hysterical laughter, followed by an apology for the amusement, but it is just so incongruous to get a phone call about windows cos I'm at hospital in the middle of a follow-up appointment for a transplant op that's gone completely pear-shaped!
The neurologist (to whom I get referred, I mean) would probably prefer a neat official typed list rather than my hand-written notes in a consulting booth, and I'm certan that certain others would! - so will have to find right name from On High for GP to write to.....
Meanwhile adopting working hypothesis based on guessed answers and coping strategy based on it.
Hallucinations still there and pop up when I relax, but no longer violent psychopathic urges, "only" video nasties with no off switch.
Exhausted as can't bear to try to sleep.
Balance still shot up. At least I got out to see Duke (the horse I part-share) and managed to walk down the track for the gate to the stables within getting into total state of panic at it being downhill and very muddy and slippery.
Duke is still off-work with an infected foot, having it re-poulticed twice a day, and going stir-crazy being kept in when all his mates are out in the field grazing.
Also eating his head off and getting fat again. But the foot is improving and he can walk on it again.
Think he'll be up to going out for a ride before I am...... well, good news for him, anyway!
Meanwhile meanwhile - saw Our Ken in the cafe, enthusing about latest thinking on fitting sclerals over grafted eyes - am I being recruited?
Rosemary

[Andrew MacLean]

Rosemary

Good news about Duke: in fact both bits of news were good. You were able to walk Duke down a slippery slope without panic (well done), and duke's foot is recovering.

I am sure that whenever Duke gets out again into the fields and has a chance to run around the excess weight will fall off. Horses are like people; Many of us tend to overeat if we are bored.

The other part of your news is less encouraging. I am sure that the bureaucratic nature of the NHS is just that; a large organization that is, in its essence, bureaucratic. In your place I would do exactly what they suggested you do; get your GP to demand the information to which you were refused access.

All the best, and I really do hope that your improvement continues unabated.

Andrew

[rosemary johnson]

Thanks for the encouraging post, Andrew.
Am just off to see Duke and his friends again this afternoon. THe latest thinking was that he was going to get away with regular re-poulticing and a spell of boredom and not going to need an op himself. Hoorah! - not least for the cost.
Friendly instructor from local riding school says she'll understand if I want to book a 10 minute lead rein lesson on a certain fat lazy plodding old mare to start trying to get back into the saddle the firt time, and Danny who runs the palce where Duke lives says when we're both ready to try, hell ride Duke for me over to where there's a flat bit of lane, leg me up there, and lead me up and down a flat lane a few times. I am living in hope I'll be back aboard before too long.
Will ask GP if he'll send off list of Qs (which I'll offer to type, but suggests he add anything else that his medical knowledge suggests would be appropriate.
In absence of info, have had to hypothesise that I can near-enough guess some of the answers.
Big question is whether the current distress to my already-none-too-good motion-sense processing part of the brain is "just" a shock reaction to waking up on the move and will go back to the normal state of disrepair, or whether it has been further damaged permanently. Now thinking it may be possibly that area may have always been less than 100% and vulnerable to further injury from birth trauma.
Possible we'll never know..... can neurologists or their brain scanners date brain injuries????
The really good news is that the hallucinations are at last letting up - am still getting a few "flashbacks" at odd times, but they no longer flood in as soon as I stop busily thinking of anything and everything else and relax. Which means I can dare to go to bed and try to sleep at last.
Have actually managed thus to start catching up on sleep over the last couple of days - about time, as was completely exhausted, not daring to try going to bed until about to drp and getting max. 2 hours sleep a night for a week. Not a good scenario in the best of health, let alone when trying to work through "normal" dopiness in wake of a G.A.
Needless to say, won't ever have another general anaesthetic again in my life! - not with my knowledge or consent, anyway.
Oh, the eye?? it seems to be doing "OK" - at least by the medics' standards. I'm to keep taking the drops and comeback next time - once I know in whose clinic to book a "next time", of course!
When I'm in the kitchen in the evenings and take the lens out of the other eye, the grafted one can probably see better than the one with the lens just taken out of it - though it is a very different new type of blurriness to get used to. Am trying to convince my brain My haven't yet noticed this....
Was on train on way to Kempton races on Saturday, trying to read Racing Post form notes onthe afternoon's runners. Lens in my own (ie/ ungrafted) eye struggling to cope with the small print, what with long hours and little respite it has had to suffer. FOund myself doing automatically what I've done for years - hold paper up to 2" fro other - lens-less - eye. Remembered with shock this wasn't "as always", this time it had The Folly in it. ANd with greater shock that I could actually focus better (about 5" distance) on the print through The Folly than with my eye "better" eye. No idea what it said; just wanted to sit on the train and burst into tears. No idea how will ever cope with getting the thing corrected (assuming the light sensitivity is going to reduce to point where this will be possible anyway - at present, if normal-to-me effect on a lens to focus light better making eye more light sensitive repeats on top of The Folly, would be too hypersensitive to wear lens unles sin very gloomy weather.
Future problem I'm not thinking about dealing with yet.
Meanwhile........ rather suspect that going out for a good stiff whisky or several with some mates might help enormously - but not throwing alcohol onto brain in this state yet. Shame.
Thanks to Andrew again for his comments, and to everyone who has read thus far.
Rosemary

[Andrew MacLean]

For reading the racing Post, I'd use a hand-held magnifier. Would be a pity to misread the form!

Every good wish

Andrew

[rosemary johnson]

Hand-held magnifier to read the racing form notes?
Well, yes, wouldn't come amiss, I suppose.
Mind, I've sometimes thought one needs a microscope for parts of the Racing Post.
Now have THREE recent ones I've hardly read. But did manage to get all through the Plumpton form for yesterday and even make some sort of stab at "reading" the races. Though remembering which names go with which colours in more than very small fields is still beyond my still-woozy brain.
In sudden moment of waiting for next race to start, had horrid flash: sometime The Stitch is going to have to come out.
Gulp, Gulp, Waargh! After all those hallucinations of tearing it out myself...
Nope, am not going to go there for a good while yet.
[Apparently, it has a single zig-zag running stitch. Why am I vaguely surprised by this???]
Walking acrosscar park on way back to the station, see London train pulling in. There's only one an hour, so start to run for it.
Can't run far or hard - not enough breath for it.
Can't run on shingle at edge of car parking spaces - balance still shot.
Get back on path. Try to run again as train still there. Desperately short of breath to try running again.
Get under bridge to Brighton platform, train still there, short train. Try to run up to front of train at 4-carriage stop. Can't breath. Gasping. Train still there. Trying to smileat driver not to pull out now.
Get to train. Press door open button. Nothing happens. Stand there pressing and pressing for nearly a minute before train pulls out with me standing there like lemon with finger still on button.
Lean weakly against station name sign for nearly ten minutes, panting madly. No feeling of being asthmatic (I do have asthma but it's not bothering me now). Just panting. Can't get air. Where's the oxygen gone>
Is this normal after a general anaesthetic??????
Rosemary

[Andrew MacLean]

Rosemary

It does not match my experience. I'd have thought that by this time the effect of the General Anesthetic ought to be well out of your system.

Why not pop along to your GP and describe these symptoms. Be prepared to hear the news that we all dread; with the passage of the years we are not getting younger.

Let that stick to the wall, if you will, but a visit to your GP may not go amiss given your experience.

Andrew

[rosemary johnson]

Thanks, Andrew.
I've been to my GP twice already since the op, and think I'll be having to go again soon anyway.
Still not feeling "right" and not sure if it is "only" still bits of anaesthetic wearing out - remember, I was on the go and hardly slept for 1st 8 days or so, trying to keep hallucinations at bay, so decay cycle may well be disrupted.
More worrying is the feeling some of the symptoms ressemble those in aftermath of neck injury and hoping this doesn't mean more brain injury bedding itself in.....
Balance still doesn't feel anywhere near getting on a horse again.
Duke, meanwhile, is improving - the vet came yesterday, cut back more of the infected foot, seemed pleased, said it can be poulticed only every other day now, and that he can go out and be ridden as soon as he has a special shoe put on that hoof, to keep the mud, grit, dirt, etc etc, from getting in and reinfecting it.
That's the good news. The bad news for Lesley, his owner from whom I rent my part share, is of course that now on top of the vet's bills she will have a big bill from the farrier for a special shoe with a cover-the-infected area plate - and a (presumably ordinary) shoe on the other back hoof. He isn't normally shod behind, and she only gets his front feet shod because he paws the ground with impatience, eg. when we have to wait at a T-junction, and wears his toes down. Otherwise his hoof walls are fine with the amount of road work he has to do, and there's no concrete at our place (that's why it's so muddy!)
Hallucinations more or less stopped now, though couple of nasty moments at thought of Stitch Removal. Trying very very hard not to think of that.
Deathly silence from hospital about change of consultant..... and I should be getting follow-up appointment(s) booked.
Rosemary

[John Smith]

Rosemary,

Don't worry too much about the removal of your single stitch. I know it always scared the willies out of me .

Stitch removal is often done at the slit lamp with a drop or twenty of local anaesthetic. No sedation, no GA and no lying down. You'll walk it.

Glad to read that your folly eye is behaving better now. That's to be expected as it slowly settles down. I really hope that as time goes on, the vision improvements more than make up for what you've had to endure in the (hopefully) short term.

[nicola jayne]

Hi Rosemary,
I think you are very very brave ((huggles))
when I came out of my GA my tourettes tics were very loud and I was very agitated to the point i was crying and they had to hold me down and they didnt know what the hell was going on because this certain tic is like im loudly gasping for air. and I had a reaction to the anaesthetic in surgery as I had a coughing fit. I think maybe I was not under enough so I was ''ticking''.
These were my only problems. I was scared when I woke up but within 5 minutes I got my bearings back.
I sort of know how you feel with regards to removing the cornea yourself because mine sort of goes through me if you know what i mean ... like finger nails down a chalkboard. I have to scrunch my eyes up really tight quite a lot but this is to do again with my tourettes.
I cant even begin to imagine what you have and still are going through. But you sound as if you have done very well and you are slowly getting better.
My neurologist is lovely and I hope you have a good one aswell.
baby steps are sometimes the best way
best wishes and good luck getting things sorted
good luck again
love
nicola xx

[rosemary johnson]

Thanks for the best wishes.
Nicola, sounds like you had a rough time too. Glad you got through it.
Glad to hear you have a good neurologist.
News on that front is: having finally faxed the description the GP asked for through to him, finally got through to a person today to ask if it had arrived. GP rang back...
.... said that A Certain Consultant had rung him "last week" (time unspecified, but almost certainly after I'd been led to believe that the process of taking me off his list and onto another was under way) and told said GP that "We are worried about her behaviour" and suggesting he send me to a psychiatrist.
GP now trying to back out of neurologist referral...... mentioned ENT as balance affected (still); so I said I would if he thought it necessary, which he said he'd think about.
I suppose it is good news in a sense if Certain COnsultant cannot now try denying there was anything wrong at all (unless he thought i was a serious head-case before I even came in for the op, in which case, why was he prepared to think I was sane enough to be asked to sign a consent form????)
But I@m mighty pee'd off at this turn of events - balance, or rather motion-processing has been on the blink for ages, and could do with sorting, op or no op, to be honest.
I can see myself marching round to GP's place with formal request under Section Whatever it is of the Medical Records Act or whatever it's called, with demand to see all the notes there.
As if I didn't have enough to do!!!!
GP, meanwhile, is refusing to contact the hospital to ask what it was I was given. Hospital won't tell me, says GP has to write to them.
Now, what do I tell an ambulance crew I must NOT under any circumstances be given, should they be called out to pick me up with broken whatevrs after a road accident, or falling off a horse, or....??
"Had really nasty reaction to an anaesthetic, but no-one will say which"????
If it really isn't in my notes, as a certain Dr said last check-up appointment, I can feel a Freedom of Information Act request coming on!
Ho hum.
Meanwhile...... went into the office - well, AN office, where I do some temping from time to time - for a day's boring easy activity to get me back into the swing of things a few days ago. Nothing too taxing, shuffling papers around and chance to get out, chat to the rest of the folks there, earn a few quid.
Sitting at desk shoving customer satisfaction questionnaires and matching mail=merged letters into envelopes, started to fell faint and dizzy.
Boss thought I wasn't looking too good. I wasn't feeling too good. Said i'd just go to the loo and then go and walk round the car park for a minute to try to get some air.
Still feeling faint, dizzy, a bit shaky and airless (like I was breathing hard and not getting the air through, like being up on the HighVeldt, where the air is thinner, if anyone knows that feeling).
Boss called ambulance. Boss worried. Had someone before temping for her who collapsed with a seizure inthe office.
Ambulance crew didn't know what to do for best. Nor did I. Pulse and BP high, blood oxygen (measured from finger, not brain......) they said fine.
Hospital didn't have a clue. Kept saying it was a bad reaction to an anaesthetic, and wasn't there anyone there who knew about anaesthetic adverse reactions.
Apparently not. This is a hospital, right?? They don't have anyone there who knows about anaesthetics????!
Meanwhile feeling more and more dizzy, airless, faint. Been left sitting on chair in waiting room for no doubt hours. Too dizzy.... trying first sitting on floor leaning on chair, then lying on floor feeling shivery.
Hospital staff - as usual - can't cope with people lying on floor. Except here, it means you're either a potentially violent drunkard, or else an immediate mental health services referral!
Much, much funnier in retrospect than at the time!!!!!!!
After lying on the floor in the breeze from the door for a while, started to feel a bit better.
Poor do for a hospital who have someone brought in feeling faint and dizzy and can't cope with them saying they feel too dizzy and need to lie down.
Am presuming it was a bit of the anaesthetic loosening itself from some body tissue somewhere into the bloodstream and getting to the brain at the wrong time.
Meanwhile meanwhile, have tried goggling the anaesthetic system I was told at the pre-op apointment they "normally" use. Nearly fell through the floor to see, on first page of returned hits, a link to an academic journal paper about how safe the stuff was to use with ketamine. Regular Archers listeners may remember this as the stuff Jazzer took "recreationally" a few years ago and nearly killed himself.
Can't say I'm an expert at Google. ANyone know the address for an online pharmacopoeia where i can get the official product information sheets (with possible side effects, contra=indications, etc).
Rosemary