Good luck to Rosemary

[rosemary johnson]

Well.
Duke is still having his foot poulticed regularly because there is still pus coming out of it. He's still going stir-crazy indoors. However, I did tape my eyeshield on and get out some brushes and a sponge and clean the mud off his face and give the rest of him a quick brush-over. He alos had a whole big put of bio-yoghurt in his dinner (and ate every scrap as usual) and has a good supply of Guinness for future dinners.
I am still not feeling I'd be at all confidant about getting back on board him even when he is fit to be ridden.
Slighty less "dizzy" but not over it, and still feel the motion-sense-processing isn't right. Still being very careful about sitting forwards/diagonally on trains and tubes so as not to get travel sick, and feel decidedly queasy if I'm on an escalator that starts to judder.
SLightly better news is that since I started wondering about the neck injury being set off again and have been doing neck-and-shoulder exercises, I've had a lot of creaky groany noises from it and stiff shoulders, but feel ever so slightly more human. Now very stiff after getting the Guinness and yoghurt out to the stables via disrupted tube and replacement buses, grr.
Oddly, the last few days I've been lying awake in bed feeling very sore inthe left hip - just where I was all stiff and sore from falling off Duke a few days before the op. It's like those aches and pains have come back again. Very odd.
Keep peering at the grafted eye in the mirror and thinking I see a series of whitish speckles in parts of a ring roughly two-thirds of the way out from centre of iris. But the parts of the ring aren't in the same place twice, so could be light reflecting off the eye. Or, of course, paranoia. Or just the eyesight's not too hot yet.
Can't see the stitch at all.
Rosemary

[rosemary johnson]

Just got back from the chiropractor's.
Says there is definitely something amiss - stiff, caught up and not moving. Has taken x-rays and will report back on Friday when they're developed.
I await further news - it could be something - whether being person-handled off operating table, or falling on floor as only way I could get off a chair I couldn't balance on, or thrashing about in panic at hallucinations - has re-set off old neck injury, to add to general dizziness effects of anaesthetic.
Whether balance will return - at least to dodgy levels post original injury - or whether now permanently suffered more damage, that remains to be seen.
No news of change of consultant, but have at least been in touch with the person who's supposed to be investigating what's happening, who assures me she's on the case.
Next step will be GP....
And tomorrow, the next installment on how Duke's foot, appetite and waistline are doing, and whether he's eaten all the Guinness yet.
ROsemary

[rosemary johnson]

Well. Chiropractor's x-rays show damage to C5 and C6 - two of the vertebrae in my neck - quite plausible resulting from trauma "a few years ago".
Bad news is they are now like that; good news is they don't appear to have suffered recent traumatic (in the sense of suddenly breaking something) damage.
There's just imflammation and nerve aggravation and the neck isn't moving properly. He thinks we can do quite a lot to help that - get it moving again, free it up so the aggravation lets up and inflammation goes down.
He's done various pulling things about, some of them apparently quite hard work (for him, I mean) and generated lots of clicks and clunks and suggeted various exercises, and I've some follow-up appointments.
So hope is that anything to do with ricking neck again in or around op can be sorted out.
Just need to find some moeny to pay chiropractor's bill, ho hum!
Still no news from hospital on new consultant, nor from GP re neurologist.
The eye? - still seeing 7 or 8 of everything, gets dry and itchy. THe left one is complaining and sore about having all the extra work to do.
Rosemary

[Andrew MacLean]

Rosemary

The news about your vertebrae sounds better. I am sorry that your eye still renders multiple images. Mine began to settle down as the sutures were removed.

I must say I am vexed that you are still having to wait for news of a new consultant. Any explanation offered for the delay?

Andrew

[rosemary johnson]

Thanks, Andrew!
I am still emitted creaking and clicking noises as I move, and I **think** the neck is turning slightly further when I try to look over my shoulder.
On the hospital front....
Well. we have some progress. No calls, no explanation, nothing like that.
A letter.
With an appointment with a new consultant, on a different day of the week.
Looks like a pretty bog-standard sort of letter.....
Unfortunately, the appointment isn't till the 8th April!!
- which will be 9 weeks less a day since the last follow-up appointment, where I was told to comeback in four weeks (is this normal??) and ten weeks less a day post op.
ANyone got any thoughts on this?
IN particularly, should I:
1. ring up the person who was supposed to be sorting this out, and play naive, and ask her what she thinks I should do?
2. ring up above person and protest
3. ring up clinic (appointment number is on the letter) with either of above approaches or something else.
4. be thankful for small mercies (!!), sit tight and go to new appointment, and don't worry meanwhile, unless ete gets sore and red and streaming enough to trek up to A&E?
5. keep putting the drops in until I run out and then don't botther any more
6. try to get GP to write prescription for further supplies and keep putting them in till date of new appointment.

Anyone reading who's had a graft recently, how long did you have to keep putting in the drops for? - I'm currently on the steroids every two hours and have got to the end of the time they said to put the antibiotics in for.
Any other suggestions??
Rosemary

[Anne Klepacz]

Hi Rosemary - as you know, my grafts were 20 years ago, so I can't remember that well how the drops regime went, but my memory is that the frequency of the steroids started reducing at the 4 week point. 9 weeks seems way too long for a follow up for such a new graft, so I'd say any of 1,2 or 3 would be sensible options and forget about 4, 5 and 6! I guess you could start with option 1 and then move through to 2 and 3 if the first one doesn't work! Good luck, and I'm glad that at least some of the problems are getting less.
Anne

[Andrew MacLean]

My steroids went from eight times a day to four times a day to twice a day to once a day to once every second day.

Sadly, at my great age I cannot remember the time scale that accompanied each of the steps.

I get my prescriptions from the GP, and not from the hospital (something to do with primary care budgets as opposed to hospital budgets). I think that the GP letter from the consultant just said how much of the different potions I was to be given. Actually, I know that this is what it said, because I made a point of reading it.

Andrew

[rosemary johnson]

Thanks Anne and Andrew.
Have attempted to follow option 1 in my previous message, but only gt hr voice mail to leave a message on. Will try her again tomorrow am then try ringing the clinic number - thinking as the appointment day is a Tuesday, they might be there on a Tuesday, and on any other day I'd gt someone else's clinic staff.
No further contact from either the medical records request nor the FOIA request, so hope this means they are bevearing away collecting up paperwork.
Hd anothe rseesion with nice chiropractor today - various clicks and creaks and what sounded like a whole bevy of gunshots from one manipulation on my neck. Does seem to be moving a bit ore. Lower back also feels a bit straighter, and bt between shoulder blades better - can put shoulders back without lots of twinges.
Have discovered why I wasn't sleeping: have started having horrible nightmares about the op experience. Well, if you follow the theory that dreams are the sleeping brain's way of processing recent experiences, it would ahve to happen sooner or later. Maybe it is sign of being on road to recovery that it thinks it can start to reprocess these! - but pretty horrible waking up in the early hours with mind full of those hoorible VISIONS!!! and in tears. Eye also feeling pretty sore - don't know if this was just being hot/starting to get dehydrated, or waking up crying, or whether I'd really been rubbing it and not just dreaming I had. Needless to day, couldn't sleep any more after that. Very rotten night. If I'm not fed up yet with early-hours radio, I wouldn't be surprised if my upstairs neightbours are!
Very depressing.
eye still a bit (more than usual) dry sore and itchy feeling today. Can't see anything particularly amiss with it.... but would I anyway?? If it's still like that tomorrow, maybe a quick drop-in to A&E wouldn't actually be out of place.
Left eye is complaining about having to do too much of the work, and objecting tot he bright light. Nice to see the sun, but not nice on eyes.
My big wrap=around hrey-coloured dark glasses finally fiell to bits too much to keep clicking back together recently, so I go out the second pair I bought at the same time - and they're brown!! I remembered I'd ordered one of each colour when I got them, bt had had a vague idea the others were green.
ANd the brown colour seems to make things brighter not darker! - and if anything, more painful.
Am I particularly hypersensitive to yellow light??? - would git with it being the early morning/evening low sun in spring/autumn that is most painful, that being quite "yellow" light.
(Not including flash bulbs, that is......)
One good piece of news, from going up to the field to see Duke on SUnday - how's this, folks?
Danny, who runs the place, saw me and said I'd lost weight!!!! - I said I didn't think so; I thought it was because the chiropractor had been clicking my lower back about, so I was standing up straighter, and might look slimmer in comparison. But he insisted. How nice!!
Actually, two bits of good news: Duke's foot is no longer exuding pus, and Lesley (his owner, from whom I lease my part-share) had been along earlier and taken him out for a ride. I thought he'd be up to it before I was....!
Rosemary

[rosemary johnson]

Well, some news.
1. still only getting voice mail for person supposedly sorting consultant transfer, so rang clinic appointments number. Spoke to nice bloke who understands problem, will raise question of delay with his supervisor who made the apptmt in April as a query and meanwhile passed me on to someone in A&E - who says they're not allowed to give their names...?!? - who understood problem and was friendly and helpful, and was most amused at thought of someone having terrifying hallucinations about That Certain quiet and harmless surgeon, fnar fnar! Anyway, if I'm worried, I'll drop in...
2. WHile involved in all these phone calls, loud rattlings and big THUD announced arrival of mail including a very large parcel from the hospital.
This is copy of medical records - and they have )apparently) sent me copies of the whole lot, right back to my first appointment there in 1987, not just the last few months I had asked for. (I hope I won't be getting an extra photocopying bill in the next post!)
Interesting reading.
Lot of very doctorly handwriting to decipher.
SOme names I was expecting (or more-or-less expecting). SOme am off to look up.
SOme things definitely don't tally and likely to be subject of complaints if not more......
SOme bizarre things like work phone numbers from 15 years ago!
Various misapprehensions over the years. SOme multiple copies of things.
Not sure if anything is missing or withheld.
It would seem from various comments that Certain Staff had even less inkling of what was going on (from my POV, I mean) than I'd thought - unfortunately, because of the misapprehensions it seems to have caused.
I can see next phone call will be to Records guy asking for protocol in how to get corrections incorporated.
One interesting observation - in the entire file, there is only one set of handwriting that actually refers to me by my name (as distinct from "the patient" or abbreviation for same) and that's my nice friendly anaesthetist. What does this say about hospitals???? - though admittedly the most frequent handwriting in there is of someone (you'll know who I mean, if you're reading this!) who doesn't write sentences complete enough to require a subject.
Another interesting observation is how different the Dr I saw at one week on apptmt's notes are from anything I recognise - he claims I had 9 questions (he counted them, while steadfastly not being interested in answering any??) and that it took him 30 minutes to try to fob me off with no answers and no interest - I think not, or my lunch date would never have seen me!) However, if what arrived today is just from the medical records request, it does prove that he was incorrect in telling me the information wasn't in my notes at all.
Has also occurred to me to think that the people who reckon that recipients can pick up attributes f the donor along with their tissue might have a field day with all this saga......
3. Went out this afternoon to a trade fair expo - trying to get back into a mindset of working sometime. Some of the stalls had various types of massage machines, raning from the hand held vibrating head to the pulsating armchair type - normally a great perk of going to expos can be trying some of these out.
Tried one of them - a type I hadn't seen before. It's basically a seat that moves, massages one's bum and legs and reputedly exercises and softens the back.
Felt fine while on it, albeit it felt a bit strange. As soon as the woman demonstrating it turned it off and I tried to get off, felt horribly, horribly dizzy. Had to still down, sit still, have drinnk of water and not look at anyone on the ohter try-out models. Felt rotten and not going to move for what felt like ages. Woman demo'ing this thing went from peeved to decidedly worried.
NOt as worried as I am! - feels like I'm not going to be trying to ride duke for a while if gt get this dizzy on a massage machine.
Rang doctor's when I got home, to ask if any news on neurologist referral as "balance" still clearly screwed up, also how to ask GP for repeat prescription of the eye drops if necessary, and also how to request access to medical records. Am expecting phone calls back on both these.
Will of course be raising this with Terry (chiropractor) next appointment, and hoping he can put his finger (literally, even!) on the nerve problem causing it, but the pattern recognition function remains to be convinced.
Oh well, at least I can claim a CPD point for going to an expo.
Rosemary

[rosemary johnson]

I am soooooooo fed up of all this!!!!!
OK, the good news first. Got phone call this am from appointments supervisor, said yes I should def have apptmt before April, booked me first available in 12 days time.
The less good news:
when I got that phone call, was just about to put coat on to go out to A&E - eye feeling dry and itchy, gooey and sticky this morning, sure vision more blurred, thought could see white shadow over iris about 4 o'clock (as seen in mirror).
After A&E style wait, result was that I can just about read top letter on Snellen chart through pinhole with grafted eye (but I did know what it said), and cute young man doctor didn't quite tell me me I was paranoid and to have a nice cup of tea and chill out, but did say it's a lovely graft and keep taking the eye drops.
Did also say I was doing the right thing to come in if anything worried me......
Then went to see Duke. Still felt very dizzy - well, no, not dizzy, exactly, just screwed up balance and motion sense system. Had hoped to be talking to Danny (runs yard, riding instructor) about booking him for my first go back at riding (he'll have to come with me on the roads at present anyway, because can't see traffic behind with right eye out of action). Now don't know whether I'll ever be able to ride him again. Very very depressed. Danny said he thought I'd be taking him out today. Tried to talk of prospect of learning to drive him instead, in horse and cart. Felt too rotten for this to be firm plans. WOuld hate to have to give Lesley notice, but don't know how this is going to work out.
Duke himself standing in his box, all alone with all other horses out in field. Apparently, when he's been out recently, he's kept barging straight through the electric fence and breaking the connectors trying to come back in again (and scrounge food from anyone in the yard, no doubt). SO he was being kept in. Looked very forlorn and was begging treats with menaces. Poor chap. He needs to go out and gt exercised.
Even worse news:
GP phoned back. Said was long time since he'd seen me. Huh??? Last time he phoned he said don't come in again, we'd dealt with it on the phone and he'd get referral in hand.
Now says, what with getting letter from Certain FOrmer Consultant addressed to him (I've got two copies of it, words ike "Solicitor" and "hearing from" spring to mind!!) and then copy of letter to New COnsultant..... and after all that, had put referral on hold.
Aarrghhhh!!!!!
If this were something that was causing ongoing damage, would be a bit late to stop it now.......
GOing in next week to consult medical records, asks any Qs I have about them, sort out referral I hope!!!!! - and see nurse re something completely different.
So fed up with all this palaver!
NOt only have I discovred why I can't sleep - because the one night I did, I promptly woke up again with nightmare re op - but have got to the stage of beating myself up over how I could possibly, possibly, even dehydrated beyond the point where ost people would have fainted, I could have been soo stupid as to let myself be coerced into this.
If there's a support group for people who've had this sort of reaction to anaesthetics, I haven't found it. If there isn't, there ought to be.
SOrry to bore everyone silly with this.
Rosemary