Latest in saga of disastrous graft op

[Hilary Johnson]

Hi
Yep, that sounds like a step in the right direction, to get the attention of the chief executive - even if they then delegate it to someone else to actually deal with, at least it puts some clout behind your case.

What's all this about inappropriate shrinks? What's been happening - have I missed that bit of the story?

I'm sure shrinks do frequently get to see people who have some sort of physical rather than psychological cause for their symptoms - it may even be a lesser-known part of their speciality to deal with it. I'm equally sure that they will be sufficiently overworked and underfunded not to try to treat you for something that you don't have - this is the NHS, not "One flew over the Cuckoo's Nest" ... but still highly irritating if all they do is give you yet another referral to someone else ...

H

[rosemary johnson]

Things definitely looking up!! - had a message on my answering machine last night from said Chief Exec himself!!!!! - giving his direct line phone No and suggesting I ring, and anther email tonight following on from that (haven't rung him yet as been out all day both yesterday and today, but will MOnday; have emailed to this effect.
ZVERY!!!!! interesting.
About inappropriate shrinks:
You've heard about the problems left y the op with understanding sensations of motion (so I get seasick in tube station lifts, etc - last time, when it wasn't even moving! - I thought it was going up but the sensations of movement didn't match the expectations!) and with inability to remember names.
these both started - ie. took a step change for the worse, suggesting damage, rather than the "graceful degradation" of ageing - dating from that neck injury accident at work a few years ago. ANd have got a whole lot worse suddenly from time of eye op.
Well, I've been asking for a neurology referral about this since I first dragtged myselg in to GP
s 2 days after op - decause with brain damage you gotta act quickly or it's TOO LATE! - and got a response of mainly "Who do you normally see?"
Eventually got to meet neurologist, who did lots of tests of whether brain and extremities were communicating - fair enough, but these are the same sorts of things the chiropractor does periodically, and if anything seriouslyw ere amiss, he'd have found it - then nothing about the how the brain itself wasn't working.
I remember you commenting on that at the time.
Well, finally got the report from that just before went to have meeting with anaesthetist friend (?), took copy with me, said why I thought this was the wrong thing to be looking into , and he said he knew the people there and would be in touch with them and follow it up.
He - well, they - also gave the impression of having this set idea of trying to persuade me to let them refer me to someone they described as "knowing how brains work" ut which had far too many rings for comfort with people in the past who have tried to fob me onto onto shrinks, stress counsellors, or whatever for what turned out to be physical problems (eg. a neck injury trapping a blood vessel in my neck) and thus were totally inappropriate things to suggest.
Ever since, more or less, I've been chasing up "what happened about this movement processing/fogetting names", and he's been giving the impression that anything I say he might possibly hang it as a peg on, he's trying to press this referal to what might loosely be called "mental health services" - and I have repeatedly asked him WHY he is pushing this and not got an answer!
Latest is that, not long ago, I sent off a reminder about "What's happening about this person who can sort out the movement prcoessing stuff?" to be met with a reply that he'd written to my GP in AUgust....... Ruth the asthma nurse found the letter, which appeared to have falled into a computer black hole while GP was on summer hols.
Went to see GP ith copy of this letter that Ruth had printed out, plus print =outs of the bits of my emails to said anaesthetist with what I'd actually been asking him for. GP claimed no knownledge of any of this - thought I do wonder what he and anaesthetist have been trying to cook up behind my back!!!! - ut found it on computer. I suggested best thing as an. wasn't answering my questions, was to write to the suggested named person, with my print-out of what I'd been asking about, and ask for confirmation that I was indeed being referred to the rght place and there was no "misunderstanding"!
- GP, need I say ??!, did nothing of the sort! - but did apparently send off my piece of paper, saying it was "something Miss Johnson would like you to have available" or some such phrase.
Having seen that, as soon as I got a letter from them saying "Sorry, we have a long waiting list and will get back to you as soon as possible" I rang them up and started chasing it up myself.
Neither the appointments-booking people nor the woman in question's PA were at all ready to leap in and reassure me this was indeed the right person to deal with a case of hypoxic brain damage to those functios, resulting from constriction of blood vessels int he neck caused by rhabdomyolysis (ie. neck and jaw seizing up rigid) as adverse reaction to steroids -
indeed, it would seem SOMEONE!! at the hospital is trying to pass of fthe blame onto me as being, ah, in need of mental health services!!!!!!
Needless to say, I am very furious about this!!!!!!!!! - and want to know what the blazes is going on here.
Immediate inclination is to feed into GP system (about to change GP so hope this registers somewhere!) that have determined this is inappropriate and have therefore concelled; also tell hospital I have found out this is totally inappropriate, am cancelling appointmnet and want to know what the F gives round here!!!!
- anaesthetist hasn't answered by latest (carefully-worded!) email..... so may end up discussing this with chief exec along with all the other things!
Meanwhile, HOw does one find the right neurologist who CAN deal with hypoxic,etc etc, to those functions?
And meanwhile, meanwhile, i guess I should be taking some legal advice, since it is just possible that a report from this woman to the effect that actually I'm not crazy and their bloody anaesthetic really has done me actual physical damage mgith be useful.......
ANy offers?
- and also find suitable representative to take with meet her......
(According to her PA, she gets a lot of people referred to her like this and does precisely that not infrequently.)
Bloody fed up, needless to say!
Oh, and to round off a perfect week - it was the Dressage CLub's latest event this evening. I'd entered..... and worked out I could dash back from Sandown races and get there in time, all being well - and had asked to be last in the first class, just in case...... only to spend nearly 40 mintues on platform waiting for train which ran very late, bue to whole line being disrupted after earlier person under a train at Woking (poor person....), then 45 minutes standing in cold and rain outside enarest tube station to the stables waiting for a bus........ think I could have walked there all the way from Esher quicker - and certaily walked fromt he tube station!
Arrived to find they were (as usual) runing late, just had time to run (literally) to loo, ja bridle on horse (he was saddled already, not time to resaddle to add our fancy dress), helmet on me and climb aboard, and get led up through normal practice area (which, I'd been led to understand) was too wet to use, so we'd be given time to warm up in the arena, got into arena..... intention to walk horse past judge and spectators each direction to show him all the people - he is rather nervy and tends to shy fromt he judge's box - got past once, was going to go round, change directionand come past other way, then do some warm up suppling turns and circles, and judge rang the bell to start! - now this horse is one who takes some getting going to coninvnce him he has to do what I saay........ well, we started. He didn't want to head up the centre to that scarey judge's box, he tried to duck out back to the door on our first circle, ground to a halt rather than go past the people,
.. didn't want to go right to the side of the arena, or the ends, didn't want to trot again after our second piece of walk, tried to duck out back to the dorr on our third circle.... and went round all the left-hand bends very stiffly with his head out to the right.....
Muggins though: Oh, why did I bother struggling here, this is far worse even than last time (when we came a resounding last). bowed to judge at the end, and turned round to walk back to the door to leave the arena....
And suddenly everything went black!!!!
Turned out to e a powercut over the whole area - nearby flats all in darkness too. At first, we thought lights had fused at the stables.
Ihalted the horse and we stood there for what felt like ages - he was remarkably good and just stood still; I thought he'd have spooked and panicked, but no. Eventually person with torch arrives, and leands us out of the arena and back tothe stable yard - and holds horse beside big ounting block so I can get off - normally way too painful due to broken rib.
Hang around for ages.... wondering what's happening, who has spare fuses. Evnetually, come to conclusion Match Abandoned At Half Time dure to Floodlight Failure........
Still hoping the lights went off before the judge had time to write down any of the overall marks and comments on my score sheet - can only think they'd have been pretty awful!
At least,t he lights went out while I was walking out after my first go, not in the middle of one of the canter bits in our second routine!
Cavalcade then adjounrns for bruger, chips and (in my case) more Nurofen!
Rosemary

[rosemary johnson]

Well!
Had long phone conversation today with said Chief Exec from hospital.
Very interesting!
AM going to write to confirm/clarify various points.
Await developments with interest.
Rosemary

[Hilary Johnson]

<gulp>
Pick self up and dusts self off after reading all that...I did ask I suppose!!!
I have heard about three-quarters of that saga, but thanks for supplying the bits I've missed, which were mostly towards the end. Last I heard was he was going on about CBT but somehow linked with hallucination-like-things. You haven't mentioned that for a while - is that now sorted out by getting off the steroid inhalers?

Agreed, a shrink wouldn't be appropriate for the motion-sensing problems.

Did you have the forgetting-names problem with the neck injury, or has it just happened since the operation? The reason I ask is, I went through a long phase of being totally hopeless with names following those knee operations a few years ago, presumably due to the anaesthetic, but it seems to have worn off now and I'm now back to being just normally not very good at remembering names.

It looks as if the "Friendly Anaesthetist" is not quite so much on your side as he at first appeared - though I suppose having seen you when you first came round, I suppose he saw you behaving at your strangest. I guess when someone decides you're crazy, anything else you say gets misinterpreted for ever afterwards.
The GP though - well, I don't understand that at all. How can "please check this is an appropriate referral" get transmuted into "Please make an appointment"?? Does he not speak English?? A fresh start with someone new sounds like a good plan - but presumably the down-side of that is that if you go to a different practice altogether, you lose touch with the asthma nurse who seems to have been very helpful. Or do you plan to get a different GP in the same practice?

Anyway, good luck with the cheif exec - I'll keep an eye on future developments.

H

[rosemary johnson]

Hi H!
To answer your questions:
- the hallucinations: have wron off to a considerable extent. They came back when the hospital tried changing the anti-rejection drugs (to a different type of steroid) so I promptly went back to the old one again (steroid eye drops are one of the things that can trigger glaucoma, hence the change). After that, ack to "as you were". The remaining bits, I think are down to adrenaline - endogenous variety, I mean, from getting wound up about something. And/or - errr, cortisone; is that right? the one produced in response to pain/injury/swelling.
I'm hoping so - since if it is hyprsensitivity to endogenous adrenaline, I can live in hope it will fade. After the neck injury accident, I was hyp[ersensitive to adrenaline to the extent I'd jump out of my skin at the least little thing - and was still bumping across the ceiling 3 hours after the end of the Wimbledon final (no, no, no! Not like the - the MEN's final!!!! - the year Ivanisovic won 17-15 in the 5th sometime on MOnday afternoon).
But that did fade - took it ages, but it did eventually.
In fact, considering the amount of time I've been lying awake and/or waking myself rolling over and not gettign comfy again lying on a broken rib, I'm surprised I haven't been getting more of them recently! - first real bit of them last night; unless you count the Hari Kiri I've been tempted to commit on the TV licensing people, of coures, but I claim that is an entirely justified response to the, errrr, jokers!!
- yes, moving to a new GP practice means losing touch with Ruth, which is a great shame as I see her more than all the others and has been super though all this. That's why I didn't move months ago.
(actually, logically, on geographical grounds, it would be sensible to move somewhere nearer - I've moved house twice, and the surgery moved office, since I signed on 22 years ago!
- forgetting names: yes, it was one of the results of the neck injury, and a marked "step-change" for the worse.
I don't just mean sitting in the tower at bell ringing practice thinking "What's that woman ringing the treble called?" - it is names I really should know of old. And now it is names of THINGS not just people.
I'm in the middle of a train of thought, or embroiled in a conversation, and it's like my brain suddenly cuts out and the word I want is gone.
Recent example: "prawn crackers". You know, those crispy-crunchy pink things you get from Chinese takeaways. Janet and I were planning to go to a meeting, and I suddenly remembered the nice CHinese nearby where we'd stopped after the last meeting, and was thinking what we might get.... and I was sitting there describing these pink crackly things, and how one cooks them and the name was just GONE!
POther examples: Parkinson's disease; peristalsis; the people who ran the stables where Duke used to live; Geoffrey Howe (it was GH who was the subject of the "eing savaged by a dead sheep" comment, wasn't it, not NOrman Lamont? - couldn't remember the names of either of them); Kingscliffe (steeplechaser whose reins broke as he jumped the third fence at Ascot - he went to on run another 2.75 miles and jump another 17 fences and win by (IIRR) 15 lengths, with his jockey hanging on to the breastplate neckstrap and praying madly - most extraordinary race I've ever watched).
It feels very like after the accident at work but worse. I can live in hope it will fade too, BUT.
- No, I don't know how "Please ask them to confirm I am being referred tothe right place" got lost after my specific request. Can only think it is something to do with all-too-short appointments and doctors seeing too many peope too quickly and not doing the paperwork till later when it is all a blur. Though either "carving up behind the scenes" or drs closing ranks and not wanting to sugget to one consultant that another consultant has made a mistake.
- CBT was previous neurologist - as way to learn to cope with the problems of poor balance/memory. Needless to say, didn't take it up - not least as reckon can do that myself.
- one trouble friendly (?) anaesthetist has is that first time he met me, I was by then so badly dehydrated the old brain was barely firing on 1.5 cylinders (as it were).
Have had an email from him, BTW. AM hoping it is being straight-up...... and am thinking of best way to reply.
Rosemary

[Barbara Davis]

Hi,
Have at last managed to get on here again and catch up with the last few weeks. Nothing to add except my best wishes as always, and fingers crossed the Chief Exec gets something moving. Take care.
Love, Barbara

[Hilary Johnson]

Hi
Very glad the hallucination-like-things are now sorted.

I have a question:

You're obviously very clear on what the symptoms are, and what has triggered them - at least most of them you seem to have worked out now. You're very clear on what treatment you don't want (= CBT).

But what you've never said (or I don't remember if you have), is anything about what sort of treatment you DO think would help. Do you have any thoughts on that?

Because obviously that will determine what sort of specialist you need to see.

H

[rosemary johnson]

Hi Hilary and Barbara, and thanks for the good wishes.
As regards what I do want:
- the problems with "understanding movement sensations" and memory recall I think are now permanent - ie. the damage has been done and won't be cured. What I need is some sort of certification of the problems and (if possible) their cause - because the effects are going to be the biggest problems for the future. Fr example, the way I forget names, and ames of Things not just people, means I'm going to have great problems ever getting any more qualifications or similar. I'd been hoping to get trained and qualified in equine complementary therapy, but I can probably forget that now also quals. in horse care. Oral exams in equine anatomy and physiology anyone, with a memory that keeps cutting out and names you know well just won't come??? NO, I thought not! The equine massage course I've been intrested in has the A&P as a written paper, but 100% pass mark. The names usually do come back eventually - but even if they give me extra time to try to coax them back, I'm not hopeful.
Also, if I were to try equine therapy courses, those that require horse-care quals. as prerequisites, I'd probably need certification as to why I only could get the stable work parts and not any riding elements - and there's no way I can ride strange horses to that standard, or am ever likely to - I need to get used to them enough to know the movement sensations I get from them.
I also want certification of what state it is in at the moment if at all possible - because anyone in future who does anything to make it worse will definitley be getting the law suit slapped straight down on them!! - and a "before and "after" will be needed (if only to convince them I hav ethe before and the motivation so they better hadn't risk it!
I don't know if there is any way of improving coping strategies - I have no concept of CBT or anything else I know of that that sounds useful - other than knowning what the problem is and being patient and understanding, and hoping the brain will adapt itself gradually.
The guy I saw in ?March suggested CBT, bt did agree a specialist RFA riding instructor may be more useful with issues about losing balance and confidence on a horse.
Other problems:
- the neck put out Terry has put back in and is dealing with keeping it on the "straght and narrow" - and given me exercises to do. That one's in good hands ATM, methinks.
- hypersensitivity to steroids @ well, I can only hope that will fade out over time, but I think I'll always be susceptible to them, given a sudden dose. I've changed asthma inhalers and will (of course) be talking to thehospital about further reducing the anti-rejection drops next appointment. (Trouble is, if I just give them up,and the THING starts to reject, it will just go, and that'll be that, because there's no way I'll be able to take enough steroid eye drops to turn round a rejection episode.)
The possible difficult bit will be how to convince anyone - eg. emergency crews scraping me up off the road after an accident - that I am serious about DO NOT give steroids.
The hallucinations have not "gone" - increase in steroids still can triger them, including endogenous (adrenaline, ??cortisone - from injury/pain/swelling) I'm hoping that will fade - was hypersensitive to endogenous adrenaline for ages after the "neck injury accident" and that wore off to "normal" eventually.
- general weakness, getting exhausted easily, muscles that feel like jelly till I start doing stretches when they feel like cast iron, and "steroid bloat" - they are slowly improving, but too slowly! I've been recommended to keep working at it gently, doing more bit by bit. Having a broken rib doesn't help with the stretching, of course! Booking in with a sports masseuse may help too, if I can be convinced she won't release more steroids all at once. Using the machine little by little meanwhile.
- - high IOP/glaucoma - this may be a reaction to the steroid anti-rejection drops, or may be a reaction to the new asthma inhalers (started at about the same time), or may be "just one of those things". John in glaucoma clinic now has me on his books, and I have more quesitons for him next appointment.
- sore eyes/sleepless nights from waking up with sore eye from reaction to anti-glaucoma drops - as above
- high BP/palpitations - some of this is undoubtedly a reaction to the new asthma inhalers; may also be related to steroids/"steroid bloat"/general pee'd offness about it all. SOmething to disucss with new GP, no doubt.
- "disappointing" vision, now looking fuzzier. THe astigmatism seems tohave been changing direction inthe last few days/week, and I'm wondering if the way it is getting ever harder to readwith it is just down tothe astigmatism getting worse, or whether it's also starting to grow a cataract. The latter is a known risk of the anti-rejection drops. In which case, , if I stop the anti-rejection drops does the cataract stop in its tracks, or once it's started, does it keep going? Is this a case of, stop the drops, the cataract may stop, the IOP/glaucoma may fix itself if it's a reaction to the anti-rejection drops, but the Thing could reject and that's that, as aove. Or I keep going, it keeps not rejecting, the glaucoma keeps going as-was, and the vision goes downhill witht he cataract.
Loafsa further questions to ask next hosp apptmt, clearly! - and before anyone says it, I know that cataract ops are routine now, but not only is there the question of another op in That Place (or find another......!) but will my system handle any post-op drugs? - and, og course, does any surgeon I'd trust to do it feel they want the job?!!!
- remaining problem of how to cnvince anyone (as in, emergency teams, as above) that when I/my medical armband say DO NOT....... they don't decide they know best and do it anyway. Corneal surgeon (the new one) says to ask the anaesthetist; anaesthetist doesn't answer (but was coninvced anyway; the surgeon override them); other medics I've asked what would convince them have put on patronising tone/smile/etc and said if I had a broken X(-bone) or appendicitis, or whatever, I'd far rather....balh blah blah. Nope, actually, I'd rather die of appendicitis than go through that lot again!!!! I suspect the only way to ensure not being overridden is to have in evidence NOK/LPA holder they are told has instructions if they override these DO NOTs, to launch law suit first and ask how badly injured I am later - and make sure it's someone they believe will. Sad, but.....
There.
Hope you were sitting comfortably before starting all that, but you did ask!
Oh, have replied to latest email from nice, friendly (?) anaesthetist, BTW, but no response (as yet anyway....)
Still working on putting together formal letter to Chief Exec - I think it may be working on that that is making me so cross the bad trips are coming back - or it may be the cumulative effect from the soreness of the broken rib. Am increasingly wondering if I ought to get a legal opinion on this before I send it - anyone any recommendations on good legal expert?
Rosemary

[rosemary johnson]

PS: strange I should have mentioned Kingscliffe in recent post - I hadn't seen him or heard abot him (his recent doings, I mean; the extraordinary race he won cropsup from time to time) for ages. Then, would you beleive, there was his picture inthe Racing Post, only the other day, winning a point-to-point.
Good to see him still running well.
Rosemary

[Barbara Davis]

I read your summary with interest. Sounds reasonable......

Apologies for reminding you of the obvious, but if you want a statement from a doctor it might be worth saying this.

Doctors are (or at least were, when my ex qualified) required to take out medical insurance, and the policies are rather like car insurance policies: they specify the insured must not admit liability or say anything to jeopardise their legal position. So the way you word your request could be crucial. The teensiest little hint of legal action could have them shutting up like clams, whether they want to help or not, just to be on the safe side.