Sunday, 22 September 2013

'Treatment' for CRPS - really?

I'm prompted to write this post because of the way a good friend who also has CRPS is currently being treated. It raises wider issues for any of us who are chronically sick. The contempt with which medical staff treat people is disgusting especially when the interventions they are doing are experimental, untried and have uncertain outcomes.This may well be a bit of a rant but I feel so angry about it.

My pain consultant and I have a great relationship. We discuss everything. He knows I will ask questions he most likely wont be able to answer, but is secure enough in himself to admit when he has no idea. Or he thinks about it and comes up with the best answer he can. He realises I wont accept flannel and also have read widely about 'treatments' be it medication, or more invasive techniques. It is refreshing to feel that it is a partnership rather than being told what is going to happen. The sole purpose is to produce the best combination of medications which give the 'best' relief with the fewest side effects.
At the moment we agree that we have reached the optimum. I really need his input into what's currently happening to my arm and fingers. What he feels is the best way to fight the ever encroaching CRPS.

In contrast my GP doesn't understand CRPS and spends all his time trying to reduce my medication as he doesn't like me being on so many. He is right on one level of course but doesn't see that they all work together to counteract the various issues CRPS causes. He will prescribe whatever the consultant asks so it isn't an issue. I see the consultant every 6 months (ish) so my care is ongoing.

we tried a nerve block years ago, together with infusions which did b****r all and TENS was utterly useless. He's offered me a spinal cord stimulator (SCS) but admitted that the chances of it doing
anything were remote and more importantly that he couldn't guarantee it wouldn't make things worse. I am grateful for his honesty especially as I haven't heard a single success story where SCSs are concerned. Which Is where I turn my attention to CRPS 'treatments'

I have regularly stated in this blog that there is no cure for CRPS. They don't even know how it works for heaven's sake! As such 'treatment' is an anathema. Palliative care is all that's available. Unfortunately the pain consultants in this country seem obsessed with nerve blocks and SCSs as 'treatments'. Once medication fails to provide decent relief (and with the best will in the world they don't do much) their next stop is to recommend nerve blocks and then a SCS. There are other therapies available such as Calmare in the USA which has reported good results (and is non invasive) but the chances of getting it here are remote. You could be thinking 'what does she know?' and to a certain extent you'd be right. I have no medical training but I do know CRPS intimately. As such I am as well placed as anyone else to discuss the pros and cons of managing the condition.

The biggest problem in this country is that diagnosis takes forever. This is the worst possible thing you can do as not treating it aggresively in the first three months greatly reduces any opportunity of getting it onto remission and makes it so much harder to keep the symptoms even vaguely 'under control'. Take my arm, it has been causing me grief since March and as I write this I am no nearer getting to the Pain Clinic than I was back then. Were it not for the fact that I have been aggresively using it despite the pain and doing archery which remarkably seems the perfect therapy I can guarantee I would have lost much of the range of motion. Instead I still have full range of movement. It hurts badly, as well as showing other symptoms of CRPS. It isn't cured of course but it is under control. No thanks to the NHS. Purely because I know my foe, can lock horns with it and know how to fight.

Anyway I digress. Invasive 'treatments' such as a SCS are terrifying unless you are backed into a corner, wracked with pain and everything else that CRPS throws at you. Utterly desperate you'd try anything. I wouldn't but lots do. They sell it well. The SCS is fitted to the spinal cord and sends small electrical pulses down the nerves to the affected limb which interfere with the pain signals the nerves are sending. Result? Greatly reduced pain. Plus you can change the intensity of the pulses using a remote control depending on how bad the pain is. Sounds good doesn't it? A TENS machine is supposed to do a similar job but isn't invasive. Pads are placed in critical positions on the back and pulses are sent. My first question is why should an SCS do any better than a TENS machine that does nothing? Especially when they don't actually know for certain that this is the way CRPS works. It could be the brain interpreting the messages wrongly rather than the nerves sending pain messages.

Secondly, who in their right mind would allow a surgeon to place electrodes directly into the spinal cord and then tweak the voltage being fired down the nerves until an optimum is reached? Scary stuff with absolutely no certainly of success and worse, no guarantee that it won't do any harm. Now or in the future? What if the wires move? I am pragmatic enough to not reach for the 'Holy Grail', accepting that nothing has or is likely to touch my CRPS. Sadly there are so many who grasp the opportunity only to live to regret it at a later date When it does nothing or even makes things worse.

The worst thing though is that people are used as guinea pigs. I find it questionable what the actual motive behind implanting the SCS is. Are they really doing the best thing for the patient or is it more to do with gaining more data for themselves? Regardless of the poor sod who maybe worse off than they were before. Take my friend. He was fitted with a new version of the SCS. He has been in hospital over a week and at least part of the problem is his SCS. Their solution? Implant another one, see if it's better and then switch the other off. Really? Are they serious? Worse they haven't discussed this with him, seemingly intent on going ahead regardless of how he might feel.

This makes my blood boil. There are other examples of things being done to CRPS sufferers, with little discussion. Inappropriate physio that results in flare ups is another one. We seem to be guinea pigs to them, they don't understand it and are just trying things to see if it helps. CRPS is bad enough without tinkering that makes things worse. Most importantly though Doctors need to take into account the feelings, concerns and wishes of the patient. Only palliative care is realistically available. Of course we all want a cure but surely it's a no brainer that any intervention should be driven by patient need. Not given to see what it any effect it has.....

Monday, 16 September 2013

The operation.

The recent week and a half must be right up there as the most difficult, traumatic and stressful I've ever had. I've given this post the title 'The operation' because that's what it's been on so many levels. As many who follow me on FB and Twitter know Eric had a make or break (no pun intended) operation on his arm on Thursday 5th September. l so dearly hope that the bone heals some 4 years after he first broke it. It has to.... surely?

Before I go further its pertinent to point out that in the last 24 and a half years of marriage Eric and I have spent no more than 4 or 5 nights apart. We are more than close, we are soul mates, able to finish off each others sentences and know what the other means without explaining. Eric forms the centre of my universe, is my rock, my best friend, was my lover (something else CRPS took away). I can categorically say, having endured the time he was away that life simply wouldn't be worth living without him. I don't mean to sound melodramatic, but a future without Eric is utterly and terrifyingly bleak. It would be as if someone had turned the lights off with me fumbling around in the dark unable to find the bright star that is my Eric.

I must pay tribute to three wonderful friends without whom Eric couldn't have gone into hospital at all. Firstly Dominic who I met through Twitter a year and a half or more. He also suffers from CRPS but until 5.30am on the morning Eric was due to be admitted we had never met in person. Extraordinary then that he would take us all the way to Stanmore then drive me home and help me back into the house. Where transport (those who should surely have taken him) failed Dom came through where so many wouldn't. Dom, you are wonderful, thank you.

Next comes Jackie, who bore the full brunt of just what it takes to care for me. Including a morning when it got about as bad as it possibly can. Taking time off unpaid to help us, what can I say? She was absolutely fantastic and supported me mentally, just as much as physically. Calm, reassuring and all round bloody brilliant, she kept me sane. We only actually worked together for 3 months before I got CRPS yet here we are all these years later. From the bottom of my heart, thank you.

And finally Sandra, who I met when we worked at the same school a year before I got CRPS and became very good friends. I knew she would be at work but faced with Eric being in hospital a further day, and Jackie unable to stay another day (although she offered) I had no option but ask her to come and look after me. She dropped everything to come over at 6.00am on Monday, having gone into work the previous day to do what she would have done. Again words fail me. Sandra, thank you. And of course I can't forget those on FB, Twitter and especially my wonderful friend Penny who supported me throughout. It is so humbling to know that we have friends who will go above and beyond to help us in times of need. So very lucky indeed.

We knew that Eric was being operated in the morning  of 5/9, so once mid afternoon came I was expecting a call either from Eric himself, or the hospital to say all was well. When it didn't come l started to worry more and more. By the time we got to 6.15pm I was beside myself. A phone call later I was none the wiser as nobody seemed to know where he was. How was that even possible? It took a further two calls and me getting slightly stroppy or hysterical, not sure which, before I found out that he'd been on the operating table some 10 hours and they were still going!! Talk of an HDU bed did for me completely but thankfully a superbly calm and reassuring Anaesthetist talked me through all the possible interventions that may or may not be needed plus what would have been happening in the operating theatre to ensure his blood sugar stayed stable. Calmer I finally got a call with good news some time after 10.30pm. Where normally I sleep at various points during the day, my brain simply wouldn't shut off even when I heard he was ok. In fact I don't think I actually managed to have an afternoon nap until Monday afternoon once we knew he was definitely coming home.

In the end the operation took 12 hours, 10 of which were spent trying to get the pin out! It beggars belief that they could spend so long but the main problem was the fact that the toolkit they sent from Southend to unscrew the original metalwork just didn't work. In the end they were forced to cut the pin in half at the break site and pull it out either end. Even as I write this, knowing that it was a success and his arm will be fine, I feel terribly emotional about what my little man went through. Luckily the first he knew about any of it was when he woke at 5am Friday morning, having lost a complete day!

If ever there was a time I wished I didn't have CRPS it was now. All I wanted to do was get to the hospital and be with him. Instead I was imprisoned in my chair more than ever as my body decided to do it's worst. At 6am I was in a terrible state, sweat literally pouring off me. My eyes felt like someone had stuck pins in them, my head was fit to explode and I felt sick. My plan to go over and see him evaporated. I couldn't move in the chair let alone go the 45 miles to the RNOH. I brought all my tablets back up, and as I explained to Jackie later, that is about as bad as it gets. Bless her for coping. Eric hated being in hospital with a passion as soon as he was properly awake, he just wanted to come home and I just wanted him home. At least we managed to get Chaton messaging working later on Friday so we could be in contact whenever we wanted to. We were so worried about each other and I spent the entire time waiting for the lightsaber noise I had set up to tell me when a message came in. He was the same at the other end.

I finally got over to Stanmore on Saturday. Quite how I got to the car I have no idea especially as I refused to let Jackie support me properly because of her back. Sheer bloody-mindedness I reckon coupled with a refusal to let Eric down by not getting there. Jackie did her best to stop me, but it wasn't going to work. She admitted defeat when, against all odds, I somehow pulled myself into the driver's seat. I can admit now that I was in agony before I even got as far as the front door, and knew it was utter madness. I just had to get there, regardless of what it did to me. It was non-negotiable, simple as that. Oh boy did I pay later but it was worth it to see the smile on his face when we got there. Of course time vanishes when you're visiting and all too soon it was time to come home. We both knew I wouldn't manage another trip. Had he been released on Sunday I would have done though, or Monday when he eventually was released. Thankfully common sense prevailed and they provided transport to bring him home. The ordeal was over and we were all back together. The dogs, Kayla especially, found the experience just as stressful. It is only now, a week later that they are finally relaxing and getting back to their happy selves.

Unless you're disabled it's probably incomprehensible to understand the toll Eric going into hospital has had on me. Both physically and mentally. I never realised just how strong his right arm is or how 'easy' it is to do things because we have found the best technique over the years. He gets the wheelchair in and out of the car with one arm for example, where Jackie and a lovely man who helped, struggled between them. Getting myself out of my reclining chair was utterly horrific where normally it's a 1,2,3, go and I'm up. Effortlessly' Everything was harder, more tiring and of course having to talk everyone through how to do everything in itself was exhausting. Jackie got the hang of 'being Eric' but it must have been an incredibly steep learning curve. The little ones adored her though and even Kayla came round.

One of the worst things was that I couldn't hide how bad I felt, my appalling mobility and everything else CRPS has done to me. When someone comes over I am sitting in my chair, never get up so I'm pretty much the Jane they remember. Jackie especially saw just what life is really like and it isn't pretty. I was dreadfully embarrassed and self conscious. Stupid I know but trying to save my friends' feelings I guess. Of course it also brought home just how disabled I am. A reality check I didn't need. Oh and far far too much time to sit and think about things I shouldn't think about. The realisation that I could have lost him. How much longer would they have continued trying to get the pin out before sacrificing the arm. The future. Scary indeed....

So he we are, present day. As ever Eric and I are working as a team to muddle through life as best we can, helping each other constantly. He must have trudged miles to and from the kitchen carrying one thing at a time. Anything requiring two arms is brought to me and then I do whatever is needed in my chair. Then more trudging taking it all back. Life isn't actually hugely different as he's only had one good arm for the last 4 years anyway. Except he is on a very tight leash so that he doesn't use his left hand. He is doing exceptionally well all things considered, I am so very proud of him. Particular successes are me doing archery, having a bath/washing him, helping feed the dogs. We even cooked a roast on Sunday because Eric really fancied it. How could I say no after days of horrible hospital food?

Without doubt life is going to be tougher than ever in the next three months but we will cope. After all we always have so why should anything be any different now? Together we can do anything....