Doing Nothing is a Skill

Doing nothing is a skill; one that I am really not so good at. I am not a very good patient while recovering from my microdiscectomy. I am not great at the art of staying in bed. I have done too much really and today I am suffering for it. To be honest I have had increased pain for a few days, having spent a lot of time outdoors on Sunday and getting up and down from the ground; I felt fine at the time, but not now! Since then, pain has crept back in and I am now left with nagging aching nerve pain down both legs but in particular my left leg. I also have some localised pain that reminds of how it felt as I came out of surgery, really internal. It also feels like it might ‘go’ again at any time and I have to remind myself that this part of my back pain, the misaligned vertebrae, that is not fixed.

I also need to remind myself that a microdiscectomy sounds like a simple surgical procedure but they did cut right down into my back to my spine, they did cut muscles, remove bone and push ligaments and my sciatic nerve away (maybe others too), and cut away the disc, leaving it ‘open’; it’s going to take time to heal! Yes! I was told this, I was told 4-6 weeks recovery, but, I felt so good in the first 10 days; I felt like the 4-6 weeks were cautionary and that I was recovering significantly faster than that! I even reduced my codeine as I didn’t need so much of it and for some of the day was managing fine with just paracetemol. I have read on some back pain specialist forums that increase in nerve pain around 2 weeks after microdiscectomy is normal as blood flows back to the nerve which has been restricted for a while; it’s also been irritated more by the surgeon, and allow for as long to recover as it was compressed for. So, I am not worried that the pain means something more sinister. I just feel rather daft for running before I could walk so to speak. I was thinking I would be ready to go for a swim on friday, I have been walking a lot and have started bending a little – I mean come on, R is doing a sterling job at looking after me, the children and trying to keep on top of our home, but he is no miracle worker and things on the floor are dangerous, and bloody annoying! – but, feel like I have taken a big step backwards so am slowing right back down again.

My advice for anyone having a microdiscectomy is – you WILL feel fabulous for the first week, you will feel like it has gone brilliantly and that means you are recovering quicker than everyone thought you would. Please slow it down, and remind yourself that your pain is not a guide right now, that reduced pain will make you think you can and therefore should be doing more. You used to be guided by your pain levels but now you have to tell yourself not to do something like picking washing up off the floor, pulling chairs out from the table. Please take it really, really slowly even if you feel ok, as a miscrodiscectomy is NOT a simple non-evasive procedure for you. It’s simple for the surgeon performing it, but it’s still major surgery for your back. You will just have to learn to read more books, watch more films, catch up on some fabulous blogs and Do Nothing!

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It’s Been a While: I’ve Had a Micro-Discectomy and Other Things.

I have been silent. I have had writers’ block. I have had reduced pain. I buried my head in the sand and stopped wanting to talk about my bloody back pain; talk about a pain in the back. I have plodded, and managed with lower level pain. Not disappeared pain, but bearable ‘let’s pretend it’s ok’ pain. Stoic. Just waiting for a date for my L5/S1 Lumbar micro-discectomy.

I stopped taking Tramadol about a month ago. How about that? It’s been worrying me, using this drug, and I feel fine without it. Great in fact. It’s been R’s 40th birthday; we went out for wine tasting and I wore heels; we had a party/gathering and I wore Fly London Wedges. I looked fantastic that night with my new dress, new haircut (even if I say so myself, as did others), and red glowing sunburn; I drank alcohol as I had no opiates or nerve blockers in my system, and it was great as alcohol dulls pain; I got drunk; we went out for post partying breakfast and I struggled to bend down to pick something up from the floor. And that was the end of the ‘good phase’. I could not get out of the car coming back from breakfast and we holidayed in a yurt for the following five days, up a steep hill, with a LOT of painkillers and the lovely diazepam to keep me going. It was actually fab, but despite backpain (you got to just get on with these things right?).

On Tuesday, having returned from holiday to just one day’s work before going off sick again, the neurosurgeon’s secretary called me; “How would you like to have your surgery tomorrow morning?’

So, this is what happened

Tuesday 18th June in the morning, I was called by the secretary, a simple yes or no, she will call me back with details. In the afternoon I got the details of where I need to be and what time. A mad rush followed, sorting out new jimjams (didn’t bother), cleaning and drying my finest pants (I had to take em off, waste of effort) and supervising R cleaning the bedroom so it was lovely when I came home. We organised childcare etc and I spent a little bit of time trying to calm down a very worried little Summer Girl, ‘what if you sleep for too long mama? I don’t want you to go!’

On Wednesday 19th June at 6:20am I said goodbye to my tearful Summer Girl, my slightly nervous R, and a Winter Boy who wanted to wave at the mini cab taking me to the hospital – there was no point disturbing the children’s routine, and it was last minute so who could have them at that time in the morning? It wasn’t an emergency so R did school run as normal – by 6:45am I was stood in a queue of dozens of other people waiting for their ops. ‘Fucking Hell’ I thought, ‘I won’t be seen first that’s for sure.’

Wrong! At 7am I was booked in, 7:15am wristbands put on me, a million questions asked by a student nurse (including, ‘are you pregnant?’ about 10 times). At 7:25am I was seen by the Registrar who told me I would be having a bilateral micro-discectomy and I signed the consent forms. I changed into the very fetching gown and stockings provided, keeping my lovely clean M&S knickers on. At 7:45am I was seen by the anaesthetist who kindly let me know he will ensure I will be provided for drug wise when I wake up. Not reassuring, as that suggests I will be in a lot of pain! I missed seeing the Consultant as I was busy contemplating whether or not to keep my pants on as I got changed when he looked for me.

At 8:43am and having been told my neurosurgeon prefers his patients with their knickers off, I was answering the following important question in the anaesthetist’s room: What Makes a Perfect Manhattan?

Next thing I know, it was 12:30pm and I was fucking freezing lying on my side in the recovery room. Not for long, as I got warmed up by a lovely blanket thing that blew air all around me. (I need one for home, but apparently you can’t buy them).

AND NO PAIN IN MY LEGS!!!

Thursday at 3:30pm – I left the hospital, having been discharged as ready and desperate to get home, with one of my best friends in the world having brought me a proper take away coffee for the journey home.

I am still waiting for the pain to return. I have done too much today, and so am actually hurting a little, and in truth I do have a little pain in my legs, but it’s throbbing pain which I think may even be referred pain. There are no stabbing pains as I lay down or sit, so feelings that my leg will snap off, no pins and needles (a little fuzzing). There is some numbness in my toes and that might never go away, but. FUCKING YEY!

The Technical Bits

No fusion! I had a left sided decompression, instead of the anticipated bilateral decompression as the surgeon didn’t want to remove bone from both sides; he said this would leave my already unstable vertebra even more unstable and the risk of fusion would increase significantly. Apparently this means a slightly increased risk of right sided prolapse in the future and need for further surgery, but he felt that was a better risk than doing it now when right sided pain was minimal. I agree. Actually.

The incision is Tiny. Really tiny. Hardly even hurts.

I am moving! I am walking! I can’t sit for too long, or stand for too long. I have a granny seat on the loo. I am trying really hard not to do too much, but I feel…NORMAL! Apart from nagging pain, which is healing pain so it’s good pain.

A success! I do have to wait and see, as it’s still early days, but I am pleased with my microdiscectomy surgery!

The misaligned L5/S1 vertebra is a backwards misalignment and could have been caused by injury to the vertebrae.  The Clever Mumsnetter, DillyTante, uncovered the likely cause of my back trouble, especially as this is NOT degenerative in my case, and all information since continues to point toward this being right.

SURGERY! (How Sad That I’m Pleased)

I am not going to moan about how much pain I am in today, or how slow the NHS system is. I am not going to complain that I have spent 18 months banging my head against a virtual brick wall to get someone to fix me. I am not even going to gripe about having to spend all day today at hospital, after a 9am neurosurgery appointment was late by 20 mins, and then having to wait 1 hour for an unplanned x-ray, having to wait for what I was told would be 2 hours in the planned assessment team, but turned out to be 4 hours. I am certainly not going to bang on about not being to go to work at all having told them I would be in at about 10:30am, or using up all my mobile phone battery reading mumsnet posts and not being able to call my husband to get me (had to use a payphone, how old fashioned is that?).

No. Not moaning. Because, I have FINALLY been put on my neurosurgeon’s waiting list for discectomy. Finally, someone has said they can do something to fix me. YEY! Ok, he has not given me guarantees, but the odds are pretty good though I think – 80/90% chance of an 80/90% improvement in leg pain. But, only a 15% chance of any improvement in my back pain.  That’s not so good, but I was expecting him to tell me something along those lines so not a surprise.

I liked this neurosurgeon. He was pleasing on the eye which is always helpful, and spoke to me, not at me. He was pretty honest, but was interested in my view about it all. I didn’t feel rushed and ignored like I have with so many other health professionals, a number on a list to be spoken to and ticked off/kicked out. I was expecting to be talked over and the decision already made; pleasantly surprised.

The recent MRI shows that the vertebrae of L5 (the top one of the L5/S1 section) is out of alignment, something called Spondylosisthesis – it’s sort of pushed forward over the top of the vertebrae below and this is probably why the disc prolapsed. He doesn’t know why this misalignment happened – could be injury, could just be the way my spine developed/a joint stopped working so well. The disc is now bulging into the nerve space, and there is still an annular tear which may well have been the shower curtain hitting my back (read my previous post about the theory of how the tear got there), but the disc would probably have already been bulging at that point and so an ‘easy’ target.

Mr Neurosurgeon said he would not normally enter into the idea of spinal fusion with a prolapse such as mine and right at this moment he is not intending to do so. He does not believe the success of fusion generally is good enough to put someone my age through that trauma, and that back pain itself can be caused by many many things and so fusing is too random. However, this vertebrae that is not in the right place, along with the fact that the entire rest of my spine is in perfect condition with little sign of degeneration, indicates that there is a large enough coincidence between me having severe localised back pain, my back ‘going’ regularly and the potential instability of the vertebrae. For that reason he is considering fusion.

So I have had some x-rays on my spine with me moving around in different positions (ouch!) to see if the segment is moving at all. Pretty undignified it was too, dressed in the silly gown with a gaping back, and having to reverse into the loo else show my butt to the very full waiting room.  If the segment moves, he will review his decision and consider fusing the vertebrae when he preforms the discectomy, if no movement, he will wait and try the discectomy first. If the back keeps going after the op and recovery (a good amount of time) he will fuse the spine. AND he told me how he would do it. OUCH again.

Recovery is quick for the discectomy – 4 weeks if I’m lucky!  If all goes well, I could be bodyboarding within 8-10 weeks – maybe even this summer!

Taking Control Back: The Expert Patients Programme – First Day

You might, or might not have read my post about my interest in the Expert Patients Programme. I won’t go into lots of detail about the Programme here as it’s well documented in my other post.

After a frought week due to having a sick  husband, children who needed entertaining, work and preparing for Mother In Law to visit – which of course entails making the house look beautifully tidy and pretending we live that way all the time instead of the shitpit we actually live in – I almost, almost, cancelled. “I don’t have the time” I said. “I have too much to do” I made excuses. They were all true. But also, my back pain has been under control for a few weeks, and so, well it’s not a disability any more is it? I can walk relatively normally – apart from apparently I still limp a little, have a slightly odd gait, but can’t notice myself – and so I am taking up a valuable space that other’s can use. But, none of that’s true is it? I had to remind myself that if I didn’t do this, I would relapse at some point and be devastated that I have not moved myself forward. I HAVE to recognise that a month at most without pain so bad it makes me cry does not constitute a cure.

And so I went. At 9:30am on the dot. Without my paperwork as I lost it and having confirmed so late in the day I was not sure if I was expected. I was not expected. There was no course at 9:30am. Or 10am. It was at 2pm! I just laughed it off as typical of my chaotic and unorganized week.

I went to Session One of the Expert Patients Programme with probably far less trepidation than most of the other participants as I am used to being on the other side of the desks. I could feel the fear in the room from some when there was the prospect of talking, and I could sense the keenness of others to have people listen to their conditions, to hear what they have been experiencing, and later found that some of those people hardly see anyone socially due to their conditions making them housebound.

The Expert Patients Programme is, I have learned, an accredited programme which is run across the world, and was developed as the Chronic Disease Self Management Programme at Stanford University, California, who now hold the licence which allow it to be run, and is facilitated the same way throughout the country. I like that, as it gives focus and structure to the group, where it can be possible to run away with talking about our ailments for 2.5 hours, it hones us in on the purpose of the sessions, to learn the skills to be expert managers in our own health. Now, some people prefer to have free-flowing groups, but I guess that is where my own experiences of facilitation come in. Where it originates and how it developed interests me so sorry if you have glazed over.

Any fears or anxieties were immediately quashed at the sight of the full Tupperware container full of Bourbon Biscuits. Now I am a great fan of Posh Biscuits, but there is nothing better than bourbons. I felt at ease.

I won’t bore you with the full details of the first session, and of course we all entered into agreements of confidentiality so I shan’t divulge details of the participants, but, my over-riding feeling initially was that I was somehow a fraud, that my condition did not warrant me being there. There were participants there who have to suffer with multiple conditions at once, some as a consequence of other conditions, some with  multiple un-connected ailments and my life felt like a breeze – I have periods of wellness, I can still socialise (although I do that less and less), I am managing to hang on to my job.  But, I had to once again remind myself that this was a Good Day. And on a Bad Day I would possibly not even be there. Re-enforcing that was the fact that not one person saw my condition as minor and lots of what I shared with the group about the challenges I face as a result of my condition were equally shared with other group members and I realised that it was not about who had the most serious condition to contend with, there was no competition in the room – we were all there as we all had a condition or more than one that affected our lives to the point of disability and we were all there to find ways to manage. We were all in this together and the group gelled quickly as this became clear.

We all shared some of our personal challenges as a result of our condition, as much as we felt comfortable doing so, and it became clear that, despite the individual challenges that were unique to us alone, there were common ones that affected ALL of us in the room – I expected pain to be a shared challenge, and it was, and mobility for a large group of people, again it was, and not being able to do the things we used to be able to do, but I was quite surprised that fatigue came up time and time again. Every Single Person in the room struggled with fatigue as a result of the differing reasons for bringing us into that room together and it helped me a lot to realise that the continuous and horrendous and often debilitating tiredness I experience now is not unique to me, does not mean something more sinister is wrong, but goes hand in hand with chronic illness. And, as a result some of the course is designated to managing fatigue as it is recognised as a symptom of chronic illness.

The other challenge that we all faced, despite our wide ranging disabilities that have brought us to the same place, was that we are all struggling to come to terms with our conditions, with accepting that our lives have changed forever and that we won’t wake up tomorrow with a magic cure – it won’t go back to how it was before and no-one in the room had fully grasped that yet but we have already all made big life-altering changes and today was the start of another big change – acceptance.

And all 12 of us in the room had taken a huge step in acceptance by coming to this first session.  Even if I don’t find the strategies for coping new to me, just consolidating what I know, I have already come a little bit closer to accepting I have a disability by attending this first session.

Although, I am feeling so much better, it might have all been a misdiagnosis and I am on the mend right…?

Taking Control Back: The Expert Patients Programme

This week I have been pointed in the direction of the Expert Patients Programme which is a free self-management course run by volunteers who all have a chronic condition of some kind, for patients who have a chronic condition of any kind. It is a 6 week course of 2.5 hours per week in a group setting and provides structured support and real strategies for coping with the impact of chronic conditions, increasing confidence, learning coping strategies, dealing with relationships as well as meeting other people with chronic conditions.

The first person to tell me about the Expert Patients Programme was a friend via Facebook as I moaned about the length of wait for my various hospital appointments. Because I have moaned to everyone about it. A friend who has a chronic condition and said despite not completing the whole course, he found the sessions he attended useful in managing how he coped with coming to terms with his condition.

Almost immediately after, and completely separately, a very close friend of mine emailed me to say she had actually spoken to the manager of the local Expert Patients Programme which is run from the local voluntary guild (of which my friend is the ACO), about my condition and also that I am a trained group facilitator myself. The coordinator has lent me the workbook so I could take a look at the course structure before deciding whether to do it or not and it looks well structured, thorough, and informative.

One of the things that appeals to me about the course is that it is run by fully trained volunteers with their own chronic conditions, and thus able to support from a personal understanding as well as being trained to facilitate learning in a group setting. I also like that it is in a group setting. There is going to be a wealth of knowledge, experience, information and support from this type of group, with people who know, who are there, who understand what it is like to never take a break from pain and who want to take control of their lives once again. I am already, ironically, a group facilitator in a cognitive psychology based area, which in essence is what self-management is but I work with people who are largely not ready to take control of their lives, and so know how important it is to be ready to do courses like this for them to succeed and the idea of being able to use my own experiences to share with others and help others has piqued my interest.

I am quite a thorough person when finding out about informative aspects of my condition – ways of coping, medical information about what is going on in my back, practical techniques, and medicines, but, what I am not so great at right now is emotionally coming to terms with the impact of chronic back pain so the support that a group like this can bring, and that I can bring to others appeals to me.

It’s funny because when I was first struggling with the pain and devastating impact of this condition, namely being told by an osteopath that I should not kayak again, he suggested cognitive therapy. But, he talked it up (or down) as being that much of my pain was psychological and that I needed to get to grips with it emotionally. My instant reaction was ‘fuck you I am not struggling emotionally’ and I walked about, did not return to see him again. To be fair, he was a tosser of the first order and did nothing practical after his initial correct diagnosis other than delay my treatment and make me feel like I should Just Get On with It.

I am not sure if it is me that has changed my own perspective in the last year, or that this course has been presented in a much better way, but, I like the idea of seeing myself as an Expert of my own condition, of taking control back, and so I am not seeing this like some counselling session to ‘come to terms’ with my condition, but one where I become myself again. Unlike those I work with, I am now ready to take control of my own destiny.

I have also read about being a volunteer myself, and yes I know, got to do the course first and learn to be that Expert myself before teaching others, but, I already want to be a volunteer. My friend clearly knows me well as she has already told the manager to expect me to end up as a volunteer!

So, I am going to find out when and where the next Expert Patients Programme is, sign myself up for it and I will post my progress on the course and any useful tips I learn on the way.

If you are interested in finding out about an Expert Patients Programme in your local area, you can either contact them via telephone or email, details on their website, or you can read more about it on the NHS website detailing specialist services available. 

It’s worth mentioning that there is also a specific Back Pain Management course run by the NHS, which I may be offered through the NHS hospital lead Pain Clinic, which will teaches specific skills relating to my back condition, but to use this as a tool alongside other treatment, and when I have more information about that I will post details. In addition to these courses there are other courses available for specific chronic conditions such as diabetes and arthritis.

The NHS 12 Week Wait.

There is a 12 week wait for the Pain clinic at my local hospital. That is, there are no appointments being offered as there are none available for the next 12 weeks, so I am somewhere quite a way down on the waiting list for appointments after that date. I take that to mean, the wait is in fact much longer than 12 weeks. I can travel for hours to another hospital, and have all my pain treatment at that hospital, and if I do that, I can have an appointment on 28th April 2013, but cannot then transfer to my local hospital when there is an appointment available.

The woman at the central referral unit that deal with referrals from GPs to the various hospital outpatient services in the South Devon area was very apologetic. She clearly has a lot of abuse from patients a lot of the time as I had to ask her to stop apologising. She said she felt terrible not being able to offer an appointment to the Pain Clinic to people who are clearly in a lot of pain. She advised me to ask my GP to write a letter stressing the level of pain I am in, but also gently suggested not to get my hopes up as, given that all the patients referred to the pain clinic are in fact in the same boat, they will all be doing the same thing.

She also told me, cautiously, that the 12-15 week wait I was told to expect for my neurosurgery consultant appointment date was overly optimistic. ‘sorry’ she said, again.

Spinal Surgery Update

That is an exceptionally boring title isn’t it? I will change it when I think of something dazzling.

I had my Spinal Pathway appointment yesterday. This is an assessment appointment to determine if spinal surgery is an option. I saw this same man, Mr P (he is a senior practitioner physio something or other)  in early August this year, and at that appointment he was clear that surgery was not an option based on my MRI results from May 2012. His view was that a discectomy (where the offending bit of disc is removed to free the nerve) would not help as the prolapsed disc didn’t appear to be touching a nerve, and that spinal fusion is a last resort, end game situation, where I am nowhere near yet. However, he also agreed things were not right, which suggested that the MRI is now out of date and things have moved on somewhat since May, and he would review this decision in two months (yeah right!). The deal was I did aggressive physio first to get me standing upright. So, I completed physio which indeed saw me standing straight again after much pain, but the result was also an sharp increase in sciatic pain and numbness and transferred largely from my right to my left leg.

After much drama with nerve blocking painkillers, getting past a GP who felt I should be able to continue as a Zombie for the rest of my life over spinal surgery, and over 4 months later, I was back where he promised I would be, in his Office, discussing my continued and worsened condition. And this time he had a completely different opinion, following intense examination and concluding I have calf muscle wastage and significant leg weakness due to what appears to be nerve damage. No Shit Sherlock! He is not exactly telling me something I didn’t know. But, I didn’t realise I had such issues with standing on tiptoes using my left leg – that explains I fall flat on my face when doing aeroplane pose after wobbling all over the studio first in Body Balance.

A full and frank conversation ensued, and some tears from me, him telling me that if sometimes peoplg go through a few years of debiliating pain and the good news is that by the time they 50, the disc will be so disintegrated there is no more pain and the vertebrae will (sort of) fuse on their own (I have heard differently but hey ho). But, Hang On a Minute I said. My daughter will not need to be taught how to ride her bike when I am 50. My son won’t need comforting with cuddles in the middle of the night when I am 50. If I carry on like this I won’t have a career left when I am 50, and maybe not even my lover to please.  I don’t want to wait until I am 50. I want to live my life NOW. Cue more tears.

So after dangling the carrot there and baiting me with my potential fate, he finally informed me that I am now a suitable candidate for spinal surgery, and following a new MRI, I should expect several different surgical options to be discussed, as there are two different factors to my back problem, one is neurological (nerve related) and the other is orthopaedic (bone related, or ‘mechanical’ as they refer to it):

1. Discectomy – to remove the prolapsed (sticking out bit) part of the L5/S1 lumbar disc, if it is indeed prolapsed (it could still be ‘chemical pain’ causing the sciatic pain and back spasms, but chemical pain is less likely to cause numbness).

2. Spinal fusion – to stabilise the vertebrae which keeps ‘popping’ in a similar way that a knee with damaged cruciate ligament gives way. He admits he cannot see another alternative to spinal fusion to fix this problem. Except. Oh Hang on! There is! After I questioned why we can get a man on the moon but cannot replace a vertebral lumbar disc, he announces that this can be done, and is being done, and on the NHS. But not at that hospital. He was extraordinarily reluctant to discuss this in detail, only saying it is as risky as spinal fusion in terms of success and complications. But, this is a whole other blog post that will be written.

3. Possibly (probably) both the discectomy and spinal fusion. As the problems with my back are two fold, one is unlikely to fix the other.

So I now need to wait for another MRI, sometime after Christmas, probably 5-6 weeks away, followed by 10 days for the results, plus another 2 weeks for the results to be discussed with neurosurgeon and orthopaedic surgeon. So, despite this progress, it will be another few months before I can even discuss spinal surgery, let alone be put on any kind of waiting list.

And the advice on how to manage my condition until then? Don’t Give Up. This man is wise.