It’s Been a While: Had a Laminectomy!

Wow. A long time. But, still many people reading since I have abandoned you. Sorry about that.

You see. I had big plans when I last posted. I was going to be an advocate for music festivals as a disabled person. I was going to out those who made it harder for disabled people to access music, and highlight those who helped and supported them. I was going to continue camping, endlessly, tirelessly refusing to give in to the pain and discomfort.

But, it didn’t happen. It was too ambitious. Because actually, as much as i loved it, my back pain and mobility deteriorated and I sort of stopped living. For a little while. I buried my head in the sand, again, about the longevity of what I know for sure now is degenerative disc disease and arthritis of the facet joints in my lumbar spine. And really, I am just not brave enough or strong enough or able to pretend my back pain is not there enough to be able to go to festivals as I would like no matter how fabulous the event organisers are. I attempted camping once this year, but due to a combination of shocking weather, mobility issues and air mattresses that keep deflating on me, it’s on the back burner. We might try once again. Hmm.

I think during my last rant or two I might have mentioned that I was waiting for an appointment to see a highly reputable Neurosurgeon at the National Hospital of Neurology and Neurosurgery. Well it did. I saw him, he was direct, honest, kind, and if I might say so, rather handsome to boot. He informed me that I have lumbar spinal stenosis due to the facet joints being little fuckers at TWO levels (it’s getting higher) – L4/L5 vertebra and L5/S1 vertebra. If you remember, my original problem was L5/S1 vertebra and was told I had a perfect spine if not for that injury. Well, that was bollocks! So, basically, along with a broad based disc bulge at L4/L5, and a thickened Ligamentum Flavem, which was helpfully pressing on the spinal cord, I had bone spurs growing into the channel where the sciatic nerve exits the spinal cord.

I had a laminectomy and decompression on the right side of L4/L5 and L5/S1 vertebra in January 2015 at NHNN, with the expectation of up to 50% overall pain relief, i.e. attempting to completely free the nerve and ease my sciatic pain, but not really being able to do much for the back pain without fusing my spine, which was given a 60/40 success rate so was dismissed for now. Initially the results were fabulous after the minor blip of a CSF leak; I could stand straighter, I could walk without a stumbling shuffling gait, I was able to walk without my lovely orange and black crutch for short walks on flat surfaces, and I felt I had, finally, turned a corner.

But no! Of course not! My pain levels went up, up up. My mood levels went down, down, down. I struggled with leg pain, back lock, constant muscle spasms from the base of my spine to my neck. I had trigger point injections which helped a lot (and four months later I am waiting for my 8 weeks review to see how these went) but wore off too quickly, I had acupuncture, which worked wonders for several days then back to epic spasms. Pain Clnic doctor and physiotherapist have both said I am impatient, have lots of muscle wastage, and to give it time, much, much more time, patience, effort. All of which I have been doing. I have slowed down as asked, but not stopped, and tried hard to be positive.

But it’s been 8 months since my laminectomy and decompression. 8 months of moving, walking (trying to get some distance but not happening), physio and i continue to struggle with standing for too long, walking, pretty much at all, and sitting for more than a few minutes. And now I am mostly back at the stuck bent over stage. I’ll take a photo of the  ‘old woman hunched over with a walking stick’ sign at Wembury Beach toilets to show you what I look like.

Degenerative Disc Disease, Do you have it? (and Other Ramblings)

As a consequence of sitting for too long at my work writing an urgent report before 1pm, then driving like the wind across town to sit for too long on small school chairs for Winter Boy’s First Ever Harvest Festival Play and Summer Girl’s First Ever Speaking Part in her Harvest Festival Play (they were both amazing and brought tears to my eyes, so proud), then driving like the wind across town again to swimming lessons, then again across town via collecting R at work, and finally back home, I am Really Fucking Sore.

My back is in spasm and my entire spine is locked from lumbar to cervical. I can’t bend well, can’t sit well, can’t stand well. So, I am writing this while waiting for the trusted muscle relaxing ‘Friend‘ to do its magic. I may do the written equivalent of slurring towards the end of my post.

I had some not so great news this week at the pain clinic. The pain that I have been experiencing in my back and sciatica down my legs, and which is getting worse, is, partly the re-prolapsed L5/S1 disc, which I already knew, but mostly coming from Vertebral End Plate oedema at the same level, where there is inflammation and damage, which I believe is Degenerative Disc Disease. And thus we have come around full circle since the beginning of my blog, where I had initially had explained that my condition was DDD, then ruled out.

I have read a bit about Degenerative Disc Disease, and end plate damage, and it’s not the most mood lifting read in the world. The pain clinic answered my questions about what the future will mean due to this end plate inflammation,  with as much of a positive spin as he could, smiley faced while telling me that “yes it will get worse”, “no there is nothing that will fix it, fusion won’t help” and “you may experience increase in pain” “but we can manage this can’t we Wine?!” “stay optimist Wine!” “you are a determined woman Wine, a fighter, keep that going and you’ll be fine!” “don’t feed the pain, don’t fuel it with too much thought” etc, etc.

If anyone has experiences of end-plate oedema and degenerative disc disease, do get in touch with your advice, and links to information, and how you cope with it.

I’ve also had a blood test to rule out a spine infection due to localised large swelling in my spine at L5/S1 level (right between my Venus Dimples), painful blood/flu feeling (which I have blogged a little about before a year or two ago now), increased feeling of unwellness during a flare-up. Don’t think much will come of it, as he took the bloods after the main flare up. Also I read on Dr Google that low-grade infections don’t show in normal blood tests. But we’ll see what happens.

I have been reading some interesting articles on the Spine Health website, get sent links via Twitter and Facebook, and so I thought I you might want to read the most recent one I have been reading called Chronic Pain on the Brain – as the title suggest, it looks at the potential impact of chronic pain on the physical structures of our brains.

Still Here. Still Love Wine. The Sea. Music. Still Disabled.

I have been absent. I have been in a bad place. A roller coaster ride of attempting recovery from chronic back pain and sliding back into the darkness of chronic back pain. I am not going to talk about details now, although I will at some point.

But, I have had a particularly negative experience at a music festival, which happened as I attempted to live a life that is not really my own, while trying desperately to forget that despite surgery, and rehabilitation, and time, I am probably not going to ‘recover’ from this chronic back pain. As the enormity of how hard it is to do things that ‘normal’ people do hit me like a brick, I was right up close to the appalling discrimination of people with disabilities a way I have not been before. I now know that the reason for this lack of experience has been because I have shut myself away from the real world and not participated in it any more than has been essential to survive, because that world doesn’t really belong to me any more. Except, it does now. I am reclaiming it.

I am going to relive some of this experience with you in my next post, and I will share some of my future experiences as I come across disability discrimination on a daily basis, and yet also find amazing people who try to be our advocates. I will use my time blathering on to do my little bit to help make access, treatment and attitudes to people with disabilities better, nicer, kinder. So that it is not so hard, it’s not so embarrassing and it’s not so fucking difficult to do the things that we used to do. Like go to a music festival.

I am dedicating the future of this blog to my Chronic Back Pain Suffering Mumsnetters who have been my rock in the last couple of years, in the last year in particular. They have picked me up when I’ve been on the floor. They have cheered me up when I have been unhappy. They understand when no-one else does. They have shared their own experiences. They have held my hand when I have been unable to cope. with the relentlessness of this fucking chronic back pain.

They also love Frank Turner, internet shopping and Fly London boots.

Micro-Discectomy: 6 Weeks After

I am making steady progress recovering from my micro-discectomy, which took place 6 weeks ago now. The scar has healed well, I am mostly standing straighter and the sciatic pain in my left leg has continued to improve significantly. The decision not to decompress the right side of my L5/S1 lumbar disc has not gone unnoticed though; there is pain on my right side. I am at this stage unclear if this pain was always there but not noticeable due to extent of my left sided pain, or if this has increased since having the micro-discectomy. I personally feel like it has increased a little, and there has been the odd day where the progression of pain has followed a similar pattern as that of my left leg, but it’s not continuous so I shan’t complain (much). I have had a couple of frightening days, in particular one evening where my left leg started hurting in exactly the same way as it had on my bad days prior to the micro-disctectomy; my calf became sore, my ankle tightened and my foot went numb and fuzzy, my entire leg became weak, with my hip feeling like it would snap. An odd and altered sensation in my groin area meant I almost went to A&E and I felt scared it had prolapsed again. But, after about 2 hours of panic, and a reasonable sleep, it felt better in the morning. My back still ‘pops’ though. I have had several horrible moments when I have bent over ever so slightly, reaching forward or something similar and found myself stuck, having to hold on to something to get myself straight again. I have had several scary moments when I have bent down using my legs to take the wait as I have been told to do, to find that my back has wobbled on the way down and I am stuck in that position. I have also had some frightening moments where my back has completely given way and I have found my legs having to collapse due to the pain and found myself stuck on the floor. In between these more serious moments (probably once a day) I am getting many times when my back ‘pops’, or grinds, I can feel something moving. I suspect this has always happened, but prior to my micro-discectomy, the movement of my vertebrae would result in my disc being pushed out more and hitting my sciatic nerve, with a cascading effect of inflammation, pain, and a period of bed rest. Now, I am just trying to ignore it. I am disappointed to note that I do not get to see the neurosurgeon for 3 MONTHS! So, someone cuts open my spine, pulls and prods me around near my spinal cord and nerve bundles, closes me up, sends me home and I see no-one for 3 MONTHS! I had been told by the Registrar who discharged me that my neurosurgeon would see me in 6 weeks. My GP thought I would be seen in 6 weeks. Yet, having not received an appointment by 5 weeks, I have been informed by the appointments team and the Neurosurgeon‘s secretary (curtly) that 3 months unless there is a clinical need to see him earlier. My GP also said that he has received no report regarding my surgery and so, had I not shown him my lovely scar he would never have known! It’s a shame as my continued back going means that when I am on my own I have to continue taking my crutch in case I hit an uneven patch. I have to take it anywhere there might be uneven surface as anything other than flat office floors etc have my back collapsing. It’s annoying more than painful; although it is painful too, it’s still nothing compared to how much sciatic pain I had before my micro-discectomy, so won’t complain too much.

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!

Why My Winter Boy Can’t Hug Me Right Now

My back has ‘gone’ for the millionth time. I am moving, but it is painful. R has just gone to do the rest of the Christmas shopping. My Summer Girl is happily colouring.

My Just 3 Winter Boy is in a happy, lovely, cuddly mood. But, he is not in a still, quiet, calm, cuddly mood, but the type that has him climbing all over me being a cat – he is twisting over my back, hanging off my neck and laying across me – normally it would be wonderful. But, right now I am having to keep asking him to stop and be still, and as he can’t, to sit next to me. He simply won’t stop.

I remind myself that this will not affect him negatively in the long term, but how can it not? How can he possibly understand that sometimes mummy loves snuggles and a little rough and tumble love, but sometimes not? It’s inconsistent. And yes I tell him it is because my back is feeling poorly, but he just does not understand that, or rather, yes he understands I have a painful back, but does not make the connection between that and jumping on me.

And it hurts me so much.

Living with Pain That Just Won’t Go Away. Part 1

I have just read an article about how chronic pain changes a person. And, once again the tears flow as I write. I have pretty much stopped talking to people in real life about my back pain. People in real life have pretty much stopped asking. I am walking straight and I have medication. Some of that medication even makes me a bit happier as a side effect right?

It reminds me a little of when my mum died a few years ago. After a few weeks/months people stopped asking how I was, because I was over it right? Well, the development of this chronic pain, it’s quite a bit like grieving. The initial shock of it, the raw pain of it is hard to manage but people were there to help me cope in the early days when the pain was visible.  Then followed the process of trying come to terms with it, learning to accept that things are not the same anymore, that an important part of my life has been lost. And in time, that support disappeared as it had all become invisible, and people don’t want to hear it anymore, if it seems ok, best not to ask, or so it seems. I have struggled to keep myself going over the last 10 months, and it is not over, and just like grieving I think I am coping then something reminds me of what I am missing, a little thing that crops up that floors me all over agin. But it has now just conveniently been swept under the carpet of drugs, and my rotten mood and distancing from others is put down to the medication. The medication has changed me, right?

I had almost stopped crying for a while. But then, I read this article that I am going to post, and it is just like I have had a conversation with someone who understands again, someone who knows, who feels it, and who has got it right. It is like I have written bits of it. And it has opened the floodgates again as even though this was not written for me, or about me, and written before I even had chronic pain, it feels like for just a moment, today, someone was listening. Even though they weren’t.

I want to show it to all my friends, my family, my work colleagues, my GP, my husband and make them read it. I want to shout at them ‘you see?! it is not my fault I have changed so much, that I am so irritable and miserable and depressed. How can a stranger understand but not you?’

And the tears are now streaming down my face, and I can’t stop them. And don’t know if I want to stop them right now. I will post the article when I have composed myself.