In the beginning…

This is my myelopathy back story for  http://www.myelopathy.org/patient-stories.html You may need to pop the kettle on and put your feet up – it’s long and repetitious; a meandering tale of fact floating amongst memories.

When I was 43 I was me.

When I was 44 I was different.  More advanced? Faster? Cleverer? More knowledgeable?  No.

It’s hard to identify when symptoms first appeared.  My problems rose from congenital defects so maybe I was all wrong from the beginning.

As a child the park playground scared me – the swing, the see saw – I felt sick, I felt like the ground was sweeping up to grab me.  As an adult with my own children –  I felt the same.

Passing my driving test was one of my biggest achievements. Did I struggle with parallel parking because I couldn’t turn my head sufficiently?  Or was I just rubbish at parking?

My first two pregnancies are trouble-free – even better nearly pain-free – did not feel contractions until baby ready to arrive.  First daughter born in two hours.  First son in under an hour.

At the beginning of this recount I was a lecturer in an FE college.  I was good at my job, I enjoyed it. Never ill, never off work. Never in need of even a paracetemol.

CHANGE

Headaches, poor concentration, stiffness,  dizziness, heavy painful limbs.  Began losing balance, every noise jarred in my brain.  When I looked up to my white board I felt sick dizzy.  Lost concentration, students started playing up, too tired to mark assignments or plan lessons in the evening.

Fall pregnant with third child.  Very happy but exhausted; have a constant dull headache. Crick in neck.   Don’t take painkillers  because of pregnancy.  Pain becomes second nature.  Need Caesarian.  Able to go home day after – my head pain greater than Caesarian pain.  Wear a wholly hat outdoors, indoors, winter, summer because slightest draft worsens head pain.  Feel constantly cold. Return to work after six months. Experience pins and needles in feet and up arms.  Suffer dead leg. Dizzy, head rush, feel like I’ll collide with the floor. Horrible spasms between shoulder blades. Pain affects my patience with students.  Carrying assignments around or handouts is hard, they feel like blocks of concrete.

Begin  missing days off work.   Diagnosed as depressed.

Fall pregnant again.   Feel ill, know it’s not the baby.   Have shoulder pain, sinus pain, legs feel heavy. At swimming pool week by week I swim less lengths.  All symptoms put down to hard pregnancy. Return to work after maternity leave.  First day is a struggle.  Can’t concentrate in Curriculum Meeting.  Every noise vibrates in my brain.  Very shaky.  Moving my sluggish body around is exhausting.  I stagger during lessons, I lose the thread of what I’m teaching.  Work is horrible.  I feel isolated from my colleagues of ten years.  To them my sickness doesn’t make sense.  I’m in for one day, away for two.  In three days away for a week.  My moral is as brittle as my body. I worsen so I hand in my notice.

At home most of my issues subside but I have a dull constant headache. Swim most days and think I’m getting older because twenty lengths reduces to nineteen and steadily decease to the point I’m swimming around in a circle.

I power walk the kids to school.  We sing The Grand Old Duke of York.  We usually get to the playground ten minutes before school.  As weeks go by I am confused by how we leave home at the usual time yet hear the bell before reaching the playground.  I think I have a virus.

Return to work, school hours only.  Two years and not a days sickness.  Still go swimming twice a week but when I’m in the water my right arm is unable to move against the resistance of the water.  The pain in it is breathtaking.  I stop swimming, I presume the problem is muscular.  It begins to affect everyday movement.  When I mow the lawn. When I raise my arms to get clothes from the wardrobe.  I use deep heat and a water bottle. My head pain increases significantly so I take every painkiller available: paracetamol, codeine, ibruprohpen. Every day  I struggle with pain, with exhaustion.  I don’t want to phone in sick so I hand my notice in.

A year at home, just taking the kids to school, I expect to feel better but I worsen.  Every tooth in my month hurts, my head pain is staggering, nothing over the counter touches it. I can’t bear noise.  The children’s voices.  The clock ticking.  I just want it to stop.  I visit dentist – no dental issues.  My eyes feel like they’re about to roll out of their sockets the pressure is so immense.  I want to gauge out the pain between my shoulder blades.  My jaw pain is so bad I drink liquids through a straw.  I visit another dentist, I insist on x-rays – they come back clear, but my face is burning up.

Doctor’s appointment. Without even looking in my mouth he  diagnoses trigeminal neuralgia and puts me on a tablet I can’t remember but no pain relief prescribed.  I no longer sleep, the pain is too powerful. My mouth feels on fire.   A week passes and I can barely lift my head off the pillow. Halfway on the route to pick up my kids from school I find myself sprawled on the ground.   Husband takes me to A&E.  Doctor seems perturb with my symptoms.  Blood is taken and painkillers given.  Lay head on pillow and for the first time in a year I feel my pain subside. I want to remain on this bed forever.

Blood results indicate swelling.  Then think I had a stroke. I’m admitted to the stroke ward. Three days later I am MRI’d – a brain scan. Brain fine.  Incidentally part of my cervical spine was MRI’d. Results show abnormalities in spine.  The neural consultant visits.  He clumsily explains the MRI – I don’t understand him.  The only thing I remember to tell my husband is that I’ll need a colostomy, I’ll be paralysed from the neck down.  Patients in my bay come and sit on my bed and can’t believe how such  a significant life altering condition could be delivered so bluntly.

Outcome; I’m to stay in hospital till a bed becomes available in the neurological ward at Charing Cross.  Over the next five weeks I see very little of my family.  I feel low, so low that coping with chronic pain is a battle.  Even morphine shots only keep pain at bay for an hour of two. My weight steadily decreases. I feel a gland inside my cheek rubbing coarsely against my teeth. As my cheek begins to swell. I ask  consultant  to take blood to check  for infection.  He curtly refuses.  I get no more daily visits from him or his team.  I am in limbo. My husband wants to take me from Hillingdon to Charing X himself but I’m in too much pain.

A bed becomes available in Charing X.  I am ambulanced there.  That night, like many previous, I have night terrors onset by the cocktail of drugs previously prescribed.  I spend the night rocking on my bed, thinking I’m in Little House on the prairie, crying.

Am due to be operated on today although I have no idea what the surgeons are doing or what the outcome is.  The surgeon strides in with his team like Grey’s Anatomy.  He cancels my operation due to a severe infection showing in my bloodwork.   He can’t understand why it wasn’t treated earlier or why I was sent over in an unoperable state. He explains that if he opened me up my infection would dangerously spread and probably kill me.  I feel wretched.  I just want to be fixed.

My infection is so rooted I am transferre to ENT.  During my two weeks there my face blows up – I’m the elephant woman.  My jaw locks whilst semi closed so I am put on a liquid diet.  A pain consultant visits me.  She looks at my notes and is flabbergasted by my cocktail of drugs.  She prescribes Pregabalin which I will be on for a lifetime and morphine.  My pain subsides.   I am hooked up to IV antibiotics but the swelling continues.  I have another MRI, a CT scan, an ultrasound.  The infection, although wide-spread, is not concentrated enough for them to draw it out with a needle. It seems the infection began in my cheek, (most probably transmitted by a dentist with unsterilized tools).  It has spread to under my teeth; two teeth need to be extracted to treat the infection beneath.  At this stage I don’t care what happens. I have to go under general anesthetic because my jaw is locked and there is very little room for the surgeon to work.  It took over four hours to get the teeth out. My swelling begins to subside but my jaw remains locked.  I am allowed to go home.  I have to be completely infection free for a couple of weeks before op. I take oral antibiotics for two weeks.  I have lost two stone, when I look in the mirror I see a skeleton, I cannot walk, I am very fragile.

Every day my mobility worsens.  I spend nights and days trapped in a chair because my body isn’t responding to my brain.  The pain is hellish.  I continue to lose weight – I look horrendous, like I’ve had all the life sucked out of me.  The kids are terrified.  I work hard to be positive.  To hug them.  To be the real me.

I get  neurosurgeon appointment.  At long last I will understand my illness.   He explains I have a degenerative disease and without the op I will slowly become paralysed from the neck down.  I might not even be able to talk.  He explains that the operation can’t undo cord damage it simply relieves the pressure from the cord to prevent further compression. He books my op for two weeks time – December 2010.

Wake up from op feeling great.  The arm pain, the head sizzling, my shaky hands, all gone.  My body feels light and responsive. I have a six-week check-up with x-rays, I happily tell the surgeon how great I feel. He sees that I can’t walk properly due to spinal cord damage and two fingers on my right hand are fixed together, I didn’t care that I had to hobble around with a walking stick, I was well again. A week later I received a letter stating that I was released from clinic.  There was no monitoring…or physio…or  occupational health referal…the only advice I was given was to keep my spine aligned.  I asked about swimming?  No, it puts too much pressure on the neck.

Two month later I recognise the signs of myelopathy again.  I think I’m imagining it.  I housewife but my arms are painful and heavy.  When I bend down to the fridge and up to the washing line immense head rush unbalances me.   I simply didn’t want to be more disabled than my current state so I make a doctor’s appointment with a view to an MRI .  Doctor poo poo’s my symptoms.  I challenge his diagnosis. He prescribes tramadol and advised me to learn to cope with pain.  Leaving the surgery I feel troubled.  The doctor clearly had no understanding of myelopathy.  I write a long-winded letter to Charing X.

Shortly (it’s now six months after my op) I receive a telephone clinic from a Charing X neurosurgeon.  He was not best pleased with my letter. He refers me to physio and told me to learn to cope with pain.  Told off again! Need more tramadol. My dependency on painkillers begins once more.

By the time of my physio  appointment I can’t function at home.  My days are spent rooted to a chair, unable to lay down, unable to move head.  I explain my pain is so acute I can’t talk or eat. Physio very concerned about my symptoms and physical state.  Emails my doctor advising I need a neurosurgeon appointment urgently.

Neurosurgeon attempts to reassure me that my symptoms are quite normal for someone with my condition.  He said it was impossible that two months after one surgery I would have myelopathy again.  I am not reassured. I get a little hysterical.  I demand an MRI.  It’s demoralising having to beg for help.  I feel lonely and spend most of my days fighting pain, berating myself for not being tougher and guilty that I seem to be a nuisance to the NHS.  In all honesty I find it hard to keep going.  If I didn’t have the children to consider I might take another course of action.

Months later my husband drives me to Charing Cross for MRI. The car journey increases my pain.  Struggle to get from car to wheelchair. Can only walk a few steps.  Need help getting onto the MRI table.  Afterwards I can’t get up.  In so much pain I go into A&E.   The doctor there seems confused when they conduct neurological tests – they say it’s odd that I can do one thing then not another.  I feel on the defensive.  No one seems to understand what’s happening to my  body and mind. I try to explain how my body is different every day, sometimes from hour to hour. They get a neurosurgeon to look at the MRI. I think why is this so horrible.  I’m scared of bad news.  But what about good news? Then I’m paranoid, weak, attention seeking.  It’s bad news – I was right. I have cord compression. I need surgery immediately. So eleven months after one operation I have the second.

This op is as good as the first.  I am a little more disabled but I can walk again and  the pain is gone. I want to go home but I’m not prepared to be discharged without referrals to wheelchair services, social worker, occupational therapy and physio.  I ask lots of questions about myelopathy whilst I have access to consultants and nurses.  Even on the same team definitions and interpretations are different.  The nurses think one thing – the consultant another – the physio something completely different.  What the fuck’s going on? It’s finally explained to me that I have an aggressive form of cervical sponylotic myelopathy.  I complain about the lack of explanation and monitoring.  They said I was in less than 1% representing  those  having had an operation who shortly have repeat symptoms.   I ask could cord compression occur a third time.  They aren’t sure so  refer me to a neurologist for monitoring.

Visit neurologist and I describe how well I feel, how successful the surgery was.  He seems quite amenable and says he’ll review me again in six months.

I shuffle around the house. I cook a little.  Do some light housework. Using a walker I can get on the bus and shop a little and bank. I remain on pregabalin but the dosage I need is much lower following op and I do not need pain relief.

Groundhog day arrives and the cycle begins again.  I’m dropping things, my foot drags, my arms are heavy, I can’t sleep because the headrush is worse when I close my eyes.  Every day is different.  Neck pain, limbs involuntarily jerking, back spasms, head pain, light and sound intolerance, general confusion.  My pain increases from dull to throbbing to a feeling that my head will implode.  I tell all this to the neurologist at my second appointment.  His amiability goes out the window.  Didn’t I understand that I’d had an operation and I was fixed?  That my symptoms were simply in my head.  That I needed to be braver, learn to cope with the pain. Bastard!   I insist on an MRI.  He is not happy.

The mri is good, no compression.  In an ‘I told you so’ tone  his letter infers my inability to accept that (quote) ‘she had some back problems in the past but they were fixed now’.  He indicated that my responses to his tests were false in some way.  I wanted to scream and pull his finger nails out with tweezers.

As time passes I worsen, I am now so worried I ask the doctor to refer me to another neurologist at another hospital for a second opinion.

Months later the appointment arrives and although the doctor seems nice I sense an undercurrent when he examines me.  He says that my responses are contradictory.  That if I could do one thing, I should be able to do the other.  I ask for an MRI.  He disputes the need for one.  He too takes the stance of the other neurologist.  I say that if he doesn’t take me seriously and I find I have compression I would be taking legal action.  He agrees to get a  consultant radiologist  to review the scan.

Second opinion finds slight compression, stenosis and bone spurs leaving limited space for the nerves.  Appointment made with surgeon.

More months pass and I worsen.  I need a wheelchair when I leave the house. Appointment comes and surgeon sees the state I’m in and requests head and full spine mri.

Three months later we meet again to review the mri.  There is compression both anterior and posterior now.  I have op in December 2014.  In total I have had three ops in five years. Each time my diagnosis is too late to avoid cord compression and further irreversible damage.  The surgeon agrees I should be monitored by his team.  At last I feel happy and confident that I won’t get compression a fourth time.

I was good for about eight months.  At my yearly review I told the surgeon my symptoms were back.  Some were subtle, some were not.  He said he’d see me in six months time.  Just before that I fall over onto my coffee table.  I’d been dizzy and falling over frequently.  At A&E they call a neurologist to examine me.  Like the others he said my responses were strange.   I said they are whatever they are.   He said he’d contact Charing x see what they say.  They say MRI me immediately.  The MRI came back fine.  I attend my Charing x appointment and the surgeon shows me the MRI and I see for myself that there is no compression, it all looks clear.  We agree to meet in six months, or before if my symptoms worsen.

And here I am.  Very dizzy, confused, pain in my arms, legs and hands, heavy limbs, struggling to get up, to walk, to function, my fingers flicking and my arm jerking sporadically, dropping everything.  So I’m nearly housebound, popping pills,unable to wash my hair independently, unable to think clearly, can’t bend so I can’t go to the fridge or put a chicken in the oven or put my shoes on.  In the last few weeks my ability to hold a conversation is disintegrating. The wrong words come out of my mouth, their words become scrambled in my brain.  I get drowsy because from the effort of conversing. I feel like I’ve got MS, motor neuron disease and a streak of madness

If I had to choose the worst side effect of this horrible disease that mimics so many others it would  be the doubt.  It simmers in the breath of nurses, it settles on the tongues on neurologists.  It’s received by my ears and it eats away at my confidence.  These uneducated care providers have done as much damage to my mental and psychological states as myelopathy has weakened my body.

This is my journey to-date, actually it’s not a journey it’s a fucking nightmare.

I offer a big hug to all those at myelopathy.org and myelopathy.support.  Thank you for investigating CSM, thank you for organising a charity to raise awareness, thank you for realising that CSM needs to be given as full a definition as MS and Motor Neurons in medical journals.

Psst…are you still awake?

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4 thoughts on “In the beginning…

  1. Thank you so much for sharing your story. I too was diagnosed, just after I turned 41, and it is due to a congenitally narrow spinal canal as far as anyone can guess. What hit me on your writing was when you said you feel like you have MS or something. When I was diagnosed and my neurologist was explaining CM to me, he said that symtomatically I would feel like someone in an MS flare, but I would not have the luxury of remission. He emphasized that the good news was I didn’t have MS, or ALS, for which I am of course grateful. The bad news was it would just feel comparable to what an MS flare feels like. I’ve found that to be true on some respects, and not so in others.
    I do hope you keep writing, I am looking forward to reading. Just based off the two pieces I’ve read. While I wish this pain on no one, ever, it is nice to know I’m not alone.

    Liked by 1 person

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