Spinal Fusion surgery – post on Pain, Love, Hope blog


This is a great description from Lisa of what a spinal fusion is, and she should know as this is her fifth!

“Four Months since Major Back Surgery – How am I doing?”

April 23rd was four months since I had my fifth spinal fusion. I have to have fusions due to having Degenerative Disc Disease that is constantly crawling up my spine and causing it to give me great amounts of pain. How am I doing and is there any changes since the surgery? Was this fifth…


via Four Months Since Major Back Surgery……..How Am I Doing Now? — Pain, Love, Hope

Photo from Buzzfeed


Sorry to have been away……

It has been over a week since I last posted and during that time our household has been hit by a variety of ailments from migraine to ladies’ problems to chest infections.  The yocomic conungest is into her second week of half term – 2 weeks!  I remember only getting 2 days for one of our half term breaks – the middle started his half term with a trip to Comic Con London – grown people running around dressed as comic book characters! – and I believe that our student is on a project week before reading week next week.  Reading week indeed – the university term only started at the beginning of the month.
The last week has been a bit bumpy for me.  I can safely report that the stimulator doesn’t help certain pains of a female variety, but I already knew that these symptoms exacerbate my back pain and so I spent a couple of miserable days at the end of last week.  It was probably rather ambitious to imagine at the beginning of the week that I would be able to attend governance meetings on consecutive nights – but I did manage the first one.  I won’t lie – it was a struggle.  Sitting for several hours in an upright seat and trying to concentrate and participate was much harder than I had anticipated, but I consoled myself that I was only just over 3 weeks post op.  But I really wasn’t well enough to attend the training with my own governing body the following night – I’m really sorry that I probably picked the wrong session, fellow govs!

As I become more mobile again, I am having to learn how I need to use the stimulator to best help me.  The change in weather is always a problem for most chronic pain sufferers and is also a problem for those with added joint issues like myself.  I know that I have already posted that the level of stimulation has changed since the permanent implant,  and I am probably a bit paranoid about increasing the voltage level.  When you have taken a mixture of strong medication for years, and you have been trained in pain control in a previous life, it is very hard to lose the mentality that says your body becomes tolerant  and therefore requires more and more for the same level of relief.  Of course in the case of opiates this is true to an extent, but please don’t be mistaken for this being the same as addiction – as hospice nurses we struggled every day with the false belief that it is better for someone in pain to resist drugs as they may cause addiction.  In the majority of cases all the time an individual has pain, the correct analgesic will be used by the body like a key in a lock to fit the pain receptors and thus inhibit them.  Finding the correct key for the lock is not always quite so easy…. Of course this does happen to a degree with the stimulation and thus with the low frequency stimulator that I have, the hospital instructs patients not to use it continuously in order to avoid creating a new “norm”.  Does this make sense?

I managed a dog walk at the weekend with Duncan and am happy to report that I was far more comfortable with the stimulation switched on.  My mobility and stamina remains hampered by the pain and stiffness at the fusion site, but it is great to be able to have some control over the leg pain.  I am still playing with levels in order to sufficiently cover my foot – I might just have to make do with a nice, new pair of boots!!  Saturday afternoon provided a perfect opportunity to sit down and recharge my battery in front of the first semi final of the rugby world cup.  Not sure I’ll ever get used to saying I need to charge myself up, and I must stop talking about being “turned on” or “off” as the former has produced some very quizzical looks……..

Time for a photo op – no, not related to that last comment!! – I had let the battery run down to 50% as instructed and the charger had already been powered by the mains.                                                        imageimage

The above pictures show the positioning of the paddle over my stimulator and the charger – the paddle is very reminiscent of the paddles on the defibrillator that used to be on resuscitation trolleys, although it doesn’t deliver such a hefty charge!

The charger is showing:

top row: my stimulator turned off, the volume, my battery at the half full mark

middle row: the imagepaddle making contact with my stimulator,

bottom row: the level of connectivity between the paddle and my stimulator, in this case it is poor with only 2 boxes filled out of 8.

The charger is now showing full connectivity between the paddle and the battery as all 8 boxes are filled in.image  Whilst in theory it is possible to be ambulant whilst the charger is strapped to your back, in practice I would say that the level of connectivity is quite positional and thus use the couple of hours it takes to watch a film, read or watch the rugby!!  It was a great match.

A gaggle of girls has just arrived home after a day out in Brighton, so time to put the pizza in the oven and prepare for a very giggly sleep over.

Blue badge

blue badgeYesterday I received an email reminding me that my blue badge is due to expire next month and I need to apply for renewal.  The process was fairly straightforward online, but having gone through so many strands of the benefits system since being “medically pensioned”, is it only me who finds the lack of liaison between departments so frustrating?  The number of times that I have given identical information to slightly different departments, and the amount of time and money that could be saved if there were joined up thinking and communication between them.  I had to upload another photo, which then had to be processed – yet there is already one on file that is on my current blue badge.  I really haven’t changed that much!  I automatically qualified due to my disability, oops no, my personal independence status, but I am pleased to see that the application process is tighter now than it was 3 years ago and that I was asked to send documentation regarding my mobility to the council.  When I applied last time I was surprised that I didn’t have to provide any form of proof, and have been frustrated at a lack of consistency across areas. Not to mention the rise in thefts of blue badges from vehicles and subsequent black market (http://www.disabledmotoring.org/news-and-features/news/post/127-blue-badge-theft-increases). I had better stop there!

This has got me thinking about how much chronic pain robs us of our independence and sense of self.  I still remember so clearly the first time that I put that badge in the car windscreen when mum and I went food shopping 3 years ago.  The last thing that I wanted was a bl..y blue badge for so many reasons, but on that day I felt an overwhelming sense of both shame and sham – I felt guilty that I was using a disabled spot when there were others so much worse off than me, but it was also like admitting defeat.  A loss of independence and actually facing up to needing help.  My dad and godfather always used to joke that they planned to retire to a chateau in France and “what was the point in having a nurse in the family if not to look after us?”.  A nurse with a dodgy back is probably worse than no nurse at all!

My blue badge has become a life saver in so many ways though, as my mobility has deteriorated over the last few years. images (1) The second fusion – the revision and extension – has actually made things harder physically and at times I feel like I’m going to snap in two at my waist.  I wrote on one of my pages about the Ehlers Danlos consultant’s comments regarding fusions, and I really understand where she is coming from now as the strain at the joint above the screws feels under more and more duress.  the stimulator can’t help with this pain.  So to be able to park the car in the centre of town and avoid a long, slow, painful walk back is priceless.  I walk with a stick or a crutch these days – too many falls leaving me too unstable without – but only 2 out of 11 of us used an aid from our pain group.  One of the men, in his 50s, said that he found it infuriating (using rather more colourful language!) that when he parked in a disabled spot he would regularly get disapproving looks, despite his blue badge.  In fact he has been on higher rate Disability Living allowance for several years, but he doesn’t look disabled – you can’t see his pain.

As a hospice nurse, I did become skilled in recognising the tell tale signs of an individual’s pain and our nearest and dearest will learn to recognise those signs in us; but Joe public is easily fooled by a cheery greeting, that very upright posture (from screws and rods, or indeed from the need to stand up to feel the scs!) or a slash of lipstick and blusher.  Sometimes we need to be fooled too.

Half Way with some late night ramblings

I wrote this at half one this morning and wasn’t sure if my ramblings should be published, but here goes……

The months between the residential course and the phone call with a date for the current stimulator trial have felt pregnant with emotions.  These have ranged from optimism to fear, caution to hope, an overwhelming, crippling realisation that this procedure will determine how I am able to live my life.  Then there are the hopes and expectations of others, all only wishing for the best for me, but some feeling impossibly high, maybe even untenable.  Failure does not feel like an option, but is a very real possible outcome and one that I have to face head on.  The pressure for a good outcome feels enormous and I am terrified of letting everyone down.

My physical condition has continued to deteriorate and I found recovery after the last surgery hard.  I had been determined after the first fusion that I would not have another operation, but then I felt pressurised into having a revision before anything else would be considered.  There comes a point where the patient with any chronic condition has a better comprehension of their own body than the medics around them.  I have always been very supple, or bendy as Dad would say, double jointed is another popular name used, but was only given a formal diagnosis a couple of years ago – probably because there was no formal diagnosis when I was a child.  Ehlers Danlos syndrome is a genetic condition which affects the connective tissues within the body, from loose joints & dislocations to detached retinas to more complex issues of the cardiac connective tissues.  So it was with some alarm that I listened to the specialist consultant at University College, London tell me that someone with my condition should not be having a fusion of any joints.  The rationale made perfect sense – a fusion of the vertebrae would serve only to destabilise the joints to either side as they became yet more mobile in an attempt to compensate for the site of the fusion.  The issue for me was that I had already been fused!

Then there was the occasion after the most recent extended fusion, when a physio declared that “we really needed to get some movement back into the bottom of my spine”, and that “this isn’t actually  nerve pain”. Excuse me?  Wasn’t the idea to prevent the spine from moving, hence the screws and concrete filler; as for a definition of nerve pain, I will take the consultant’s view of a damaged nerve root in combination with the feelings experienced in my body as the definitive.

I have suffered an increasing number of falls due to my leg caving in beneath me on top of an existing foot drop. Two stand out in recent weeks, the first of which occurred when my husband and the boys were away, leaving me home alone with my daughter. I had just gathered the washing in from the line on an August Saturday evening when, whoosh! Over I went straight down onto my coccyx on the concrete patio. The dog came pelting down the garden, I didn’t know that he could run that fast, and my daughter came running out.  She couldn’t get me up and ran along the road to fetch my friend and her 19 year old son, who duly arrived back uncertain what to expect.  At this moment the tears came and I felt I couldn’t go on –  my friend told me the next day that it was at this moment that the realization of the enormity of the situation hit her: just how much this was affecting me, both physically and emotionally.

The second big fall came the weekend prior to my hospital admission.  We had arrived at a hotel in Bournemouth for a weekend with family & friends and a dinner dance on the Saturday night.  The journey was a typical Friday evening – roadworks, heavy traffic etc etc, and despite our regular stops en route, by the time we drove into the car park I could no longer feel my leg or foot.  Diners in the hotel restaurant were treated to an almighty yell, to accompany their steaks and wine, as my leg failed me and, as if in slow motion, I toppled over and landed full length on my right side on the hard ground.  My brother was watching from the first floor and said that the scene had resembled something out of a Monty Python sketch, because my daughter ( 5 inches shorter than me)had been helping me but as I went over, she was too light to anchor me down – and instead her legs shot up into the air and she looked for all the world as if she had jumped me!! I couldn’t move for pain and  shock – talk about wanting the ground to swallow me.  Things were to go from bad to worse as  I discovered that I hadn’t picked up enough medication for the weekend and I began to feel slightly panicky.

So began my worst night – Duncan’s also!  Obviously I had really hurt myself from the fall, but just didn’t want a fuss.  But my leg pain was already going in overdrive during our meal and by the time that we went up to our room, I was feeling quite stressed.  When this pain takes grip there is nothing that will relieve it.  There have been nights like this in the past – I pace, I watch an amazing amount of rubbish TV on the ipad, I drink tea and at home I talk to the dog.  But this night was different and by 2.30am the only feeling that was completely engulfing me was an inability to carry on.  The pain and related irritation in my leg was at a level that I could no longer cope with, and once the tears started I could not control the sobs wracking through my body with almighty gasps. I’m not sure that anyone other than my fellow chronic pain sufferers will be able to have a grasp on the desperation I felt.  If my leg could have been removed I would have used a hacksaw myself; in those quiet hours of the early morning it is very easy to question oneself, and I can honestly say that I made a decision that night that I can’t live another 40 years like this.  Duncan made a more immediate decision and so it was at 2.45 am that the hotel porter was letting a deranged sobbing woman dressed in a nightie and leggings out into the pre-dawn morning.  The actual drive home was easy, but became busier as we approached the M 25 (what are all those people doing at 4 am??).  However we learnt the meaning of climbing the walls that night, as I experienced the worst car journey of my life  and was literally hanging onto the ceiling fabric from my nails.  I felt like I had gone completely mad.

Duncan did settle me eventually, and the funny side to the tale was that our eldest didn’t even realize we had arrived home until I walked into his room at 10 am that morning!  “I thought you went to Bournemouth!!”  This really fills us with confidence for future trips away……. We even managed to drive back for the dinner…..and Sunday was a beautiful day.FullSizeRender (2)

But take it from me that there is an unseen, unheard army of pain sufferers living out there.