Although not strictly about my back, it is related.
I have this thing of ‘having a go’. It is easy to say, “no I can’t” and then miss out on things that I might have managed, or end up too frightened to do anything, so I toddled off to Cyprus at the end of the school holidays.
It was fun and hard but I managed with the help of my ever-patient kind husband. On the way back we went to Thessaloniki for a few days and spent much time floating in the sea.
When I returned home I saw an orthopaedic surgeon, MT and he managed to prod in all the pertinent places (not in a good way) and wondered if it ‘smarted a little’.
He put my MRI on screen and asked if anyone had mentioned that I have Bertolotti’s Syndrome. This is a lumbosacral transitional vertebrae (LSTV). There, information you didn’t know you needed. No-one had. Back in the day the first ever surgeon said I had a tether and SJ said I had a high bit.
Well, I am so special I even have an extra disc in my sacrum but that in itself doesn’t cause an issue. The problem continues to be from nerve damage. What to do eh? Obviously, I went back to Cyprus.
We arrived on the Wednesday and took our grandsons away for the night on the Friday. All was good until 4am when I got up for the loo. On the way back my leg gave way and I reached out for the bed that wasn’t there and crash landed on my hand. It hurt. A lot. It didn’t stop hurting and so we ended up at the hospital.
Examined and x-rayed the casualty doctor thought it was probably not broken and I excitedly sent texts to my daughter and husband while laughing with relief at the drama.
I was a happy bunny until the orthopaedic surgeon, CP, arrived and said it was fractured.
Now I was a sad bunny in a cast and not allowed to swim. I was a bit woe is me what with my casted arm in a sling and using a walking stick with my good arm because of dodgy legs.
What the hell - relieved I’m not a dog or I’d have been sent to the farm.
When we returned after a week to see CP we had a coffee near the clinic and there was a patient from the hospital over the road (yes other side of road) with drip in situ, IV bag hanging on pole, drinking coffee and having a fag. Straight into the centre of the Venn. If this means nothing please see previous blog post.
Back home now for a while before, you’ve guessed it, Cyprus for Christmas. This will be the last trip because they have been posted to RAF Scampton. It doesn’t have quite the same ring as Cyprus but despite lack of sun and sea it will be brilliant and a whole new adventure.
And Red Arrows!
Red Arrows photo by Owen Kemp on Unsplash
Warning - contains delicate swears. I sometimes silently say, “Fuck off” and occasionally I say it out loud without noticing. It has happened a lot recently but rather than be a sweary Mary I shall write 'fo'. Much sweeter and makes me seem less of a strop.
I have talked before about the 2 lists I have in my mind - they are the ‘eh’ and the ‘seen it all’. There is also a Venn diagram and the section where they cross over is called ‘wtf?!’
This past week has seen new entries onto to both lists and one new into the centre. It all starts with pain; again?
Shut up woman.
Nutshell for anyone who doesn’t know;
Years of ongoing debilitating painful back issues, diagnosed with sacroiliac dysfunction, left side fused, screw into L5 nerve root (not fun), screw removed, donor bone squirted in, right SI fused, heal a bit, hurt a bit, heal a bit, hurt a lot, given the diagnosis ‘CRPS’, fo, have injections, pulsed RT, more injections, diagnosis changed to bone issue, added in sore hips from years of SI issues etc etc. How long should a list be?
I have had episodes of urinary incontinence and this started up again a couple of weeks ago coupled by the ghastliness of fecal soiling and ridiculous pain. This is as yuck and scary as it was before. I saw my GP and she said to pop along to the hospital. It was all very deja-vu of a few years ago and I explained I haven’t recovered from that so I said no and she said I could go to a different one.
The ortho doc at the hospital examined me and this is how the conversation went:
Doc - do you want to come in for a few days?
Me - no.
Doc - are you managing at home?
Me - yes.
Doc- why not come in?
Me - no thank you.
Doc - if you have a slow developing cauda equina you’ll have to come back. Or, just stay.
Me - thank you for the kind offer but NO.
Doc - you definitely want to go home then?
Me - yes. Please. Can I go now?
Doc - or…
Me - are you saying you think it better if I stay?
Doc - I am responsible so if you go and then have to come back questions will be asked.
Me - of you not me.
Doc - we will look after. You can rest and have nice pills.
Me - I can do that at home.
Doc - yes, but…
Me - are you saying I should come in?
Doc - yes.
Me - okay I will come in but I’m not staying long.
Doc - brilliant I’ll sort it.
This is a shortened version and although it sounds stroppy it was actually funny and we were laughing a lot.
A lovely nurse appeared, bundled me into a wheelchair, because I didn't want to be moved on the gurney, and took me to the ward. I was given my own room and popped onto a chair. Orthopaedic wards tend to be busy and this one was no exception. I had nothing with me so was supplied with everything up to and including net panties. You probably know of the bags that resemble a bit of net and then stretch in all directions when you put shopping in them… Think same.
Nurse Feelingfine brought me Paracetamol. Fo! I could take them at home. Two minutes later morphine arrived. Now we’re talking, fairies here I come.
It all got fuggy after that.
I had cups of tea whenever and enough morphine to shut me up. They know what patients are like.
In the morning I got told off for sitting on a chair because I was on ‘bed rest’ - didn’t know that was still a thing. I told the doctor I’d like to go home, he smiled sweetly and said, “you can in a few days.”
My actual personal nurse was amazing. Loud, funny, caring and married to a Reverend. What's not to love?
Nurse Iaminchargeofpain visited. She looked at my foot (it drops) and said, “you know that’s permanent?” Fo! When asked, “what brings you here?” I told her quite colourfully.
She then did the red flag to a bull movement. You know the one. Head slightly to the side, Thatcher voice gearing up and said, “have you spoken to anyone about your psychological state?”
She straightened her head then down it went again, “because you don’t hurt so much if you are happy.”
Lovely Nurse heard me telepathically and appeared like magic and Nurse Iaminchargeofpain scuttled away.
Then they gave me diazepam and I got fuggy again. They also gave me laxatives because they knew what was coming. Or, rather what wasn’t.
Later in the day I began my mission to escape. I fibbed and said I felt better after the diazepam and then I got moved into another room with 5 other patients. Definitely on a mission to get home. Been there done that planned the escape.
Anyway, the woman opposite returned from surgery looking very grey, asked for morphine and then said she needed a cigarette. The ward sister told her she could when the IV had run through. The cannula was in the top of her foot.
A different consultant visited me. Between him and the admitting doctor they decided I have ankylosing spondylitis, permanent nerve damage with drop foot and possibly a slow developing cauda equina. “Thanks,” I said ‘but can I go home now?”
“Well..” he started. I tilted my head to the side and breathed in, he blanched and said, “If your nurse is happy and they can do the paperwork today, can sort your meds then yes you can. Or, you can stay.”
I told lovely nurse and she said she'd ask Sister who said okay to go but much to do to let someone out and I was welcome to stay.
While they were sorting paper and meds the woman opposite got up, unhooked her nearly empty IV bag and handed it to her bewildered husband and put on her trainers. Yes, trainers. She squashed her foot including the cannula with bits attached into it and did up the laces. And here we have the Venn diagram and the section where they cross over.
By now I was prodding Mick, “what the hell” I asked, followed by, “I know, not my monkeys”. Sister arrived and took control in a fairly scary way. That’s what Sisters do.
Sister then came to me. My tummy sank but she smiled sweetly and said, “We are just sorting your meds but we are having a hard time sourcing a doctor to prescribe, a pharmacist to deliver and available diazepam.”
Oh no. I felt caught in a headlight and should have said something but my mouth would not comply. The moment passed.
Half an hour later Sister returned, “Matron is on the mission to sort your meds.”
Matron has better things to do than buzz around the hospital like a fruit fly for a fibber.
I suggested a prescription would suffice. That worked.
I left with instructions to rest, do limited physio, take meds and return instantly if all hell let loose in my nether regions.
So far no giant puddles.
Picture credit Photo by Park Troopers on Unsplash
Let’s talk about nerve pain. Anyone who has experienced it knows it is an absolute bitch. The last operation I had on my back was in January 2016 and although the slow healing was frustrating I was definitely on the right path. Until last summer when odd pains started to attack my back, hips, foot, ankle and leg. At first I was excited that the L5 nerve, that was previously damaged, was firing as part of its recovery.
Then the sensations turned trippy. To have a limb that is numb but hurts when touched is weird as is walking down stairs feeling imaginary water flowing over the top of your foot. Numbness that also feels like scalded skin ripping off and bits of your own foot disappearing is, well, peculiar. Anyway, if you’ve had it yourself you know what I am talking about.
When I realised something was maybe amiss I toddled off to my GP. We all know that doctors love rashes, pus and syndromes and it was the latter label for me. After a few months of tolerating, grinning and not bearing it I asked to try a nerve block. My wish was granted and I had it done last November. Short-term relief and then deja-vu of vicious pains, muscle spasms in back and bum, toes all pointing in different directions and the high/lowlight of peeing my pants in Sainsbury’s. Not intentionally.
In discussions with the surgeon (SJ) and pain consultant (BN) I asked if it was possible that my own bone had grown too much around the bone graft, that was used as scaffold in my sacroiliac fusion operation, and it was pushing onto the nerve; continually annoying it and compressing it. He felt that was quite likely and suggested pulsed radio-frequency treatment* to ‘free’ it. At this point the GP's earlier diagnosis of syndrome became a ‘bone’ issue.
I recently had the treatment. I was trundled to the operating theatre on my bed, rolled onto my side and after agreeing with BN which was my left side; marked with a cross so he’d remember, I clambered onto the op table. If you have ever been awake in an operating theatre it is like party town. There are many people involved in your care and the important job of keeping one alive. While I was lying prone with a pillow under my chest, my bare bum in the air and the anaesthetist trying to coax my veins to appear everyone carried on with normal chat.
“What would you normally be doing?” and, “do you see clients for hypnotherapy?” and, “how many words are in a book?” and, “I’ll need the longer curved one” and then nicest words, “night night.”
As I drifted off to snoozeville* I had a wave of clarity in my thoughts of what is next.
Watch this space… or that one over there...
This post was written in March and I am re-sharing now I am a year down the line.
To celebrate the anniversary I have included an image of my beautiful pelvis. You're welcome :)
Although I'm not quite out of the tunnel because I have a damaged nerve I am so close I can taste it.
As I tend to bang on about how healing writing stuff can be I decided to write my back story. Rather than put it as a post or series of posts I have made it into a downloadable pdf.
The choice to read or not is yours. Please note it contains occasional swears.
The footnote is that it has helped. I was unable to think or talk about some aspects without crying and having emotional pain stabbing my heart.
Soggy lumpy squidgy bits
Saggy flappy floppy tits
Constant nagging tighten your core
Sod right off while I eat some more
Carbs to numb and fatten the bum
Add some weight and then some
The perils of pain can be weight gain
Being over stuffed yet under nourished
Does not encourage the body to flourish
The other extreme is the anorexic look
When the thought of food turns one crook
And there’s nothing to them ‘cept skin and bone
While the constant pain makes the body moan
For many years I was a vegetarian who ate fish (I know…). Then I slipped off the veggie wagon and one day a bloodied steak on my plate triggered something deep inside – not in a good way and I became a veggie again but still ate fish (I know…). I also ate dairy and eggs, yes… still know…
The fish then stopped being at risk from me but not the dairy. Occasionally I questioned why but as this was usually with a face-full of chocolate there was my answer. When I was recovering from the surgeries I began to think about nutrition, mostly relating to inflammation. Instinctively, and it’s not rocket science, I thought that if I could reduce it, it might aid my healing and ease the nerve damage. Inflammation is not all bad as it works to warn us of danger but too much is not good.
A serious contender for the too much award is dairy (I knew…) but really?! Cut it out? What, totally? No more cream, chocolate, milky puds, cheese… I decided to give it a try rather than fully commit. This was mainly to check that it was even possible but also to ensure I didn’t keel over in hunger swoons. Ha ha ha.
Well, the change in me verged on freaky and the healing acceleration noticeable. I studied some more and read paper after paper on nutrition: mostly relating to healing but also to developing and maintaining rude health.
This is my journey but I thought that through my sharing you might find something useful; especially, if you are poorly, in recovery or suffer with a chronic condition.
Okay, so how is it going? Fine, thank you for asking. I have discovered delicious recipes and am enjoying many benefits I hadn’t considered. Oh, and the eggs went too.
I will share things such as vegan eating when dining out and all about whole-foods, plant based, reduced or oil-free and life without cheese made from milk.
I am in Cyprus just now staying with my daughter and her family. Tonight she is taking me to Little Plates and the wonderful Roddy is going to prepare me a vegan delight - http://www.roddydamalis.com/
The daft hippy reference has been coined by my son, Paul. His term of endearment is daft hippy shit.
Image - http://www.freevectorvip.com/
A lot of my work is with people who have injuries or suffer with chronic pain. As someone who has been there I know the challenges and desperation this can cause. The picture is of my feet in the cold sea earlier this year sans pain.
Some years ago I was working at a golf club with a group of nine and there were two people with shoulder and neck pain, three had low backache, one had a headache and one suffering with IBS. The two people remaining who didn’t have any pain felt quite left out. If you ask around most people experience discomfort of one sort or another quite frequently, especially, backache, headaches and the ilk. It might be just general aches and pains, pain following injury or surgery or a stress related problem in the form of tensions in the body.
And of course, pain leads to stress which leads to pain and so on. It can be a seemingly never-ending downward spiral and when this happens it is called chronic.
Before any pain can be managed it is important to ascertain the cause. Pain is always a signal that something isn’t right or that an injury has occurred and anything new must be discussed with a doctor or similar. But, pain from stress, in the form of a holding pattern or as an emotional response, can be excruciating and seem like an injury reaction.
Chronic pain, whatever the cause, is stressful and debilitating but it can be therapeutic to be doing something, i.e. taking responsibility and action towards alleviating the discomfort/agony. Most doctors are pleased if their patients want to take control and attempt exercise, play games or participate in sport and taking part in something is also good for mental health and can help to stop depression creeping in. However, how is it even possible when pain is so severe it’s a challenge to get out of bed to go to the bathroom?
Back to the original group - all involved were regularly taking pain killers.
They all wanted to live a good life and would just take extra pills either before or after any activity. Too many pain-killers can cause problems of their own so it is not good to take an excessive amount.
However, although I would certainly not suggest stopping the popping if you are going to participate in games or sports regardless you may as well try to manage pain and tensions in a natural easy to manage way.
Your perception of discomfort is important. Pretending the pain isn’t there is not the answer. But, being aware of, and then managing it, is.
If we are relaxed we hurt less so breathing properly is the first step. We tend to breathe in and hold our breath if we experience discomfort but that makes our muscles tense and sore. Examples are fist clenching, jaw locking shoulders up and bowels tightening and there are many others.
If you have any pain now think about where it is and imagine breathing into that part of your body while mentally soothing the hurt away. Think about how you would feel without any pain and how you would stand, sit speak, walk, swing a golf club etc. Act out these movements or behaviours in your mind. If you do this a few times your subconscious can begin to find ways to create it permanently.
Here is a technique you might find useful especially for helping a headache - but beneficial for any type of pain. Of course prevention is always better but sometimes we are not quick, or aware enough and we’re not on a mission anyway because we are too normal! Identify exactly where you are feeling pain right up to the edges of it. Be specific. Does it end level with your left ear, is it resting on an eyebrow or is it drilling into you shoulder? When you know, begin to focus on softening it and rubbing it away from the edges inwards. However you would do this is right for you - whether you visualise, feel or talk to the pain. Again imagine not having it. Play a mental game of something you enjoy or would like to try, feeling well, with your body relaxed and your mind clear. Doing this when relaxed releases natural endorphins that create pain relief and make you feel good. This also happens when exercising or if we are busy. Have you ever hurt yourself but either not noticed or not felt it until later when you stopped and no longer had a distraction?
Visualisation in very useful because you can personalise it in any way that you like. You can create numbness - like a local anaesthetic at the dentist, relax muscles, close imaginary gates that slow pain or change the shape of it to make it manageable.
Here is the method the group used:
Sit comfortably and start the relaxation process by regulating your breathing and slowing everything down - including your thoughts. For a few moments just ‘be’. Now direct comfort to any areas where you think it might be needed. If you have discomfort in any joints soothe them with an inner balm that dissolves away any build-ups and lubricates the whole area to allow a freedom in movement. You can create warmth or coolness depending on your needs just by thinking about it. Drift away into a dream knowing that when you ‘awaken’ you will feel more comfortable. You need only do this for a few minutes.
Be as creative as you can and your mind will do all it can to help
You may remember, at the end of September, my back ‘went’ – this is a handy word that covers all kinds of episodes, incidents and peculiarities – and it has only just, very recently, returned.
Being incapacitated is not fun. Pain is tiring.
You get to the stage where you fib if anyone dares to ask how you are as the sound of hearing yourself moan, again, again, and once more for luck is just so dull and boring.
Old lady grunts (lots), profanities tumbling from mouth un-restrained (not pretty), not being able to drive (frustrating), blue toe nails (hideous colour, not one I'd ever choose) were quite common-place and it became hard to imagine any kind of normality and comfort would ever return.
It took Mick, hypnosis, hospital, an amazing surgeon’s magical mojo, several injections (caudal epidural, facets and sacroiliac joints for those who want the minutia of information :)), my family and most cool friends to help me heal. But, recover I did because of having such amazing love and support. Thank you.
In other news, we are now living the dream of having a Greek Island home to complement our one here in the UK. This means I can offer more retreats and specialist holidays for groups and individuals on Lesvos. Squeal and happy dance. Gently... just in cases x
Would you like to discuss ailments? No? Farewell. Yes? Read on…
You may or may not know that in times of yore I was a poorly dollop and needed surgery to mend my back. Quite a lot of surgery. More than once. The last one, in 1991, was a Transpedicular fixation of the spine at L4, L5, S1 – I am sharing this information for those who want nitty gritty :).
This is a magical operation whereby the surgeon puts screws into the spine and attaches rods in-between them. Mostly all is good in the lower back department. Twinges, niggles and random spasms can occur but are manageable. My husband and smalls are marvelous and help whenever it is needed. About 13 years ago I had an ‘episode’ whereby the disc above the operation prolapsed. But, after various interventions I managed to avoid further surgery and was back to it.
Just over a week ago, in the blink of an eye, a spasm occurred and instead of easing away it got worse. Then worse still. By the weekend I was unable to move and am moving around slowly with words falling from my mouth that I didn’t know I knew! I am reminded of the pleasure a growl can bring about. The face is the cloud picture is having a good old groan - the likeness is uncanny.
My tummy knotted into a nauseous ball when my lovely doctor said, ‘I think you have a prolapsed disc or discs in amongst your metalwork. I will get in touch with the hospital where you had the operation and we’ll take it from there.’
The surgeon’s secretary at Frimley Park has this morning been sent a fax. Ha, a fax – we thought that only happened in Jersey… and I am awaiting her call.
I am sharing this as I think you should come with me on this road. It would be cool to say, "let’s skip together but I have spasms and pains so excuse me while I watch you".
Here you will find the up and down tales of my back and related problems.
I specialise in pain management and having been a patient I have a deeper insight into the difficulties chronic pain can cause.