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.

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!

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.

A Little Bit of Positive

After my miserable ramblings last night I have some good news. Well, I had that news yesterday but it did not feel so great at the time of my posting as I was wallowing!

Yesterday morning I got a call from the hospital, or rather their outsourced team, to offer me a short notice MRI on saturday (tomorrow). How about that! So, 9:20am and I will be thrust into a huge metal tunnel for 20 mins. I quite enjoyed it last time, gave me a chance to relax without children jumping on me!

It will take about 10 days or so to get the results in, and Mr P the Spinal Pathway practitioner has to then speak to the neurosurgeon and spinal orthopaedic surgeon about the results, so I am not expecting any appointments for at least a month. But, it’s closer than it was last week.

I am in a strange way, pleased that I am in the middle of an acute phase of pain as maybe it will show more than last time. I have been so concerned that they will do the MRI when things are more settled and it won’t show the severity of what I am experiencing. Mr P himself said it is better to do an MRI in the acute phase but due to waiting times it doesn’t often happen. He said the ideal was, an MRI immediately before it ‘goes’ and then an MRI in the middle of it all, and then one when it has improved, to get a good idea of what happens inside the spine area so, I guess this is as close to that happening as it will ever be.

I still don’t understand why no x-rays are being done, or CAT scans, as these show the facet joints and any damage there more clearly than an MRI and he has said there is some chance it is facet joint  related. If the MRI shows less than the pain suggests is going on I will insist on a CAT scan/X-ray. But, we are moving forward, even if it is at a snail’s pace.