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My Island

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BY Alison Murphy  MY…Hell…opathy Laughing & living with Cervical Myelopathy

Yesterday, my husband dropped me off at the swimming baths.  The large float around my waist and my cycling style of swimming does raise a smile or two. Some call me a ninja turtle, some the barnacle woman.  Today my predicament was in the changing room.  With my combination lock.  I tried it, retried it, again and again to no avail.  It wasn’t the wrong combination; it’s my date of birth but the lock is old and sometimes you have to press it together for it to open.  I could see my issue was attracting the attention of others. So in my swimming costume, dripping, I went to reception.  A female employee, with bolt cutters came to my rescue.  She struggled a little until suddenly the lock exploded apart.I opened the locker.  Opps.  Someone else’s clothes.  I used the ‘f’ word; it was called for.The leisure centre girl was laughing. The audience of women changing was lapping it up.  I said this has probably happened to other people.  No, she said.  What an idiot.

​My locker was only three doors away and I didn’t even think to try it.  I was resolutely sure that the locker was mine.  I felt so sorry for whoever’s locker it was.  They came to the leisure centre to work out and relax.  I had to lock their locker with my lock.  I left an apologetic note on their door telling them the combination was at reception.  Then I went for a cappuccino.  With myelopathy you have to let these things wash over you.

​I’ve been a little Norman Bates lately; stable one day, struggling with my myelopathy persona the next but I’m quite proud of myself.  I’ve reached out to people to try to reconnect and everyone’s been so generous with their time and considerate of my condition. I’ve been going to events and sometimes only staying an hour; but enjoying that hour.I went to a lovely patisserie for coffee and cake this week but told Diane I could only stay an hour because I can’t stand independently, or straighten, if I sit over the hour. Also I’m learning how to be a bit precious. My husband calls me the princess and the pea because everything has to be just so.  If a chair is too soft my back spasms, if my shoe laces are too tight I can’t put shoes on, if my teacup is too full I can’t lift it, if there is spice in my food I get IBS.  I went from being totally laid back, able to eat street food cooked by greasy haired, uncompliant to hygiene standards, cooks to being very needy.  I don’t beat myself up about it.  I’m not elderly or frail or sick but titanium is holding my neck together and if I’m not careful my cervical spine might topple like Jenga bricks again.  So, when I’m chatting I need my friend opposite me, not beside.  I can get in a car, but I can’t get out without help.  I need to be front of the loo queue because I can’t hold it. If we can’t be fussy now, when can we?


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When the kids were little I would make up silly songs randomly about their activities and personalities.  I’d wake them up with a song, tuck them in with a song.  For a couple of years myelopathy stole my voice.  It truly is a challenging condition.  I wake up and feel how I image the wolf did in Red Riding Hood when his stomach was filled with stone.  My body is so uncomfortably heavy, my bones hurt, my head is constantly under a vice like pressure…and that’s at the start of the day!  Understanding cervical myelopathy has been an uphill struggle, health professionals are not up to speed with a condition whose numbers are constantly rising.   When my daughter was little she was given many Barbies and the first thing she’d do is cut Barbie’s hair off. Grace, I’d say, it won’t grow back, once it’s cut, it’s cut and that’s like the spinal cord, damage is unrepairable – for now anyway.  It’s through contact with fellow suffers at www.facebook.com/groups/myelopathy.support that has me bursting into song again.  Knowing that I haven’t got some one-off, obscure condition, that I’m not alone, is a huge deal.

My youngest daughter was eighteen yesterday.  When I think of Caitlan it’s like my heart bursts like a popping champagne bottle.  She was ten when I was first admitted to hospital with what doctors thought was a stroke. We’re throwing her a party.  If I thought too much about the organisation I’d feel overwhelmed.  I’ve called it a casual gathering, that way expectations aren’t so high.  I think if you have alcohol and food a party will run itself.  My brother and his family are over from Kilkenny, Caitlan’s godparents from Dublin, I can’t wait.  Having something to look forward to is paramount.  I look forward to coffee with my husband, I love going to M&S Food Hall, I have book club, I love Grace coming home for the weekend.  My four children are the painkiller that get my weak body out of bed.  They are the smile on my face.  They understand my condition better than neurologists, they live with my highs and lows and they pick me up.

I am happy.   It’s a glorious feeling.  Once I get going I feel my life is full of possibility even though by four I will be totally slayed with pain and tiredness, my limbs will be unresponsive, and I will sway around the house, everything falling from my grip…I’ll end up in bed for a few hours but at nine I will be enjoying Love Island with my family. If I think of 2018 so far I’ve been part of a training video to help doctors diagnose myelopathy earlier, I’ve been skyped (never skyped before) by Dr Nidhi who is gathering info to support early diagnosis.  I’ve enjoyed two book club gatherings.  Met Sharon for a pub lunch.  Gone for innumerable coffees and cake and have the calories to prove it.

Caitlan recently returned from a geography trip to Iceland.  Putting on her crampons, about to step foot on a glacier she thought of me.  My mum will never do this, she’ll never see this powerful landscape with winds that take your breath away.   It’s true.  But it’s ok.  I’ve come a long way since my dramatic arrival at A&E.  I’m walking.  I’m sleeping.  I’m managing my pain.  I’m with my family.  I think of my life like Bear Grylls’ The Island.  Myelopathy is my island.  I’m not a giver upper and I’ve learnt to enjoy simple things.
Right now I’m sitting by the window, the sun is shining, a squirrel has just run the gauntlet across my garden fence while my two dogs are going bonkers.  Spanish rap is playing. I’m glad to be alive; the alternative is an eternity I’d like to avoid.  I’ve come to not expect too much of myself.  Myelopathy is the long game.

You can check out Alison’s blog My Hell opathy here 


Heart Break for Myelopathy

Risk of acute coronary syndrome in patients with cervical spondylosis 
​J.Hamilton

What were the aims of the study?

Various studies in the past have described cervical spondylosis (CS), the degenerative changes in the cervical bones and ligaments contributing to degenerative cervical myelopathy, as associated with increased sympathetic nervous tone[1][2].

The sympathetic nervous system plays a role in controlling blood pressure, heart rate and various other aspects of our cardiovascular health.  But part of its control structure also lies in close proximity to the cervical spine. 

Increased sympathetic activity is known to contribute to increased atherosclerosis and cardiovascular events such as stroke, and myocardial infarction (heart attack)[3]

​The authors noted that no research had been done to link the above statements, if CS does cause increased sympathetic activity, does this logically follow that CS causes an increased incidence of cardiovascular events?
 
With this in mind, the aim of the study was to determine if cervical spondylosis increased the risk of cardiovascular health issues, specifically acute coronary syndrome (ACS), which in common terms is a heart attack.

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The sympathetic nervous system is involved in controlling many of your bodies organ systems. Signals originate from ‘ganlgion’ that lie adjacent to the spine. The ganlgion in the cervical spine are involved in control of the cardiovascular system

How was the study performed?

The authors used a national insurance claims dataset of 22 million people in Taiwan and identified 27,947 patients with CS, they then matched this with a similar number of non-CS patients of a similar age and gender distribution, as well as matching numbers of patients with other health problems such as hypertension, diabetes, asthma and stroke. This was to allow them to compare the incidence of ACS between the groups without other diseases invalidating the comparison. 

All the patients were followed up until they had a diagnosis of ACS, died, or the end of the research period occurred at the end of 2011. After this, the number of ACS events in each group were measured as a rate over the number of “person years”. This being the number of times a diagnosis of ACS was made for every year a patient lived.
 
In this paper, the incidence of ACS was measured as number of ACS/1000-person years. These were then compared between various groups to obtain a ratio, to determine the relative risk of ACS occurring in a person with CS compared to someone without ACS in a similar state of health.


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What were the main findings?

Overall, the study showed that patients with CS were 13% more likely to have an ACS, than patients without CS. This was determined ‘statistically significant’, but in real terms this represents a very small increase from 3.9/1000-person years to 4.27/1000-person years in rates of ACS diagnosis. 

Looking in more detail at the patients with CS, for those with myelopathy the risk was slightly higher, increasing by 20% but interestingly, it seems treatment of CS has an effect in reducing ACS risk:
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Patients receiving spinal decompression surgery were less likely to have an ACS (27% reduction)
– Patients receiving rehabilitative therapy were less likely to have an ACS (33% reduction) 

The statistical difference between the form of treatment for CS and reducing ACS risk was not significant.  

​How could cervical spondylosis cause acute coronary syndrome?

This is a good question, and not entirely clear.  The researchers suggested that it may be to do with the sympathetic trunk. The cervical sympathetic trunk consists of collections of nerve cells bodies, called ganglia, aligned along the front of the spine.  The ganglion in the neck are involved in control of the cardiovascular system.  This special group of nerves also connect with the ligaments of the spinal column, such as the posterior longitudinal ligament, and the lining of the spinal cord. Irritation to these structures is thought to cause the sympathetic nervous system to increase its output, for example to fibers in blood vessels around the body, causing them to constrict and causing hypertension, which contributes to a diagnosis of ACS.

What can we take from this study?

This is not the first study to show a relationship between CSM and Cardiovascular health (we have previously described a study specifically looking at high blood pressure), however it is the first to show an increased risk of a heart attack.

There are a number of limitations to this study, and the actually increases in risk are relatively small.  But it adds to the research of CSM and Cardiovascular disease, and once again shows the far reaching impacts of CSM.    

References

Shih-Yi Lin et al. Risk of acute coronary syndrome in patients with cervical spondylosis ​Atherosclerosis 2018

[1]M. Singh, I. Khurana, Z. Kundu, A. Aggarwal, Link of sympathetic activity with cardiovascular risk in patients of cervical spondylosis, Int. J. Clin. Exp. Pathol. 3 (2016) 41e44 
[2]M. Singh, I. Khurana, Z.S. Kundu, A. Aggarwal, Galvanic skin response in pa- tients with cervical spondylosis, IJHSR 6 (2016) 148e152.
[3] N. Marina, A.G. Teschemacher, S. Kasparov, A.V. Gourine, Glia, sympathetic activity and cardiovascular disease, Exp. Physiol. 101 (2016) 565e576,