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Patient Stories - Gertrude Kitty Part 2

CSM Rears its Head Again

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 Cross.

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.

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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 and 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?