Living with myelopathy.

Over the last 12 months my life has changed significantly, both physically and mentally. In April 2021, I wrote a blog about my journey from diagnosis to surgery and the few months that followed.

However, with hindsight being a wonderful thing, it was still very early days indeed.

Despite all the reading and research, I really didn’t understand myelopathy and I’m not sure many really do, apart from those who it has an effect on.

The last 12 months have been challenging to say the least, I was glad to be back at work, back on the grass, back working with players in the gym – and then you wake up each morning. Log rolls to get out of bed, sleeping with a pillow under the knees, disturbed sleep due to spasms.

It’s become more about management than anything else, something I’ve had to learn to work with. I guess more than anything, you can choose to be defined by this, or you can do your best to live with it and manage what it throws at you. Not ideal, but it’s the reality.

Degenerative cervical myelopathy is poorly understood, and this makes it difficult to diagnose (1). Before my diagnosis, and aside of the excruciating pain, I had become clumsy and forgetful. I couldn’t get in my apartment door without dropping the keys a few times.

This functional decline may be common, but this could easily be attributed, or dismissed, as just having a bad day, or just getting older (2). The symptoms may be distinct, but are still somewhat misunderstood. Therefore, it may take both high suspicion and neurological examination to diagnose (3). An MRI can help detect whether the spinal cord is compressed. I posted my MRI Images in a previous blog.

Rehab has never been a linear process. I know this from my practice as a sport scientist in football. More than ever before I have learnt to be patient. There are days when you just think “where is this taking me” or “when will this end”. It’s hard to say. Some days you wake up and really don’t feel like it. It can become tedious. It’s far, far slower than any football injury I have ever had.

It’s not a case of break a bone/snap a ligament, immobilise, build it up again and away you go. I acknowledge that’s an oversimplification, but I am sure you understand my point. There are neurological factors at play here too.

I still have no feeling in my left hand. I don’t really notice it now, but sometimes you wonder if it will ever come back. The doctors just can’t say. They are hopefully, but such was the extent of the nerve damage (and the length it needs to travel from cervical spine to hand during the regeneration process) it’s going to take time.

If anything, I still can’t thank the surgeon, Dr. Zhang, who realised the severity of the problem so quickly. It’s no secret it was emergency surgery and I will be forever grateful for the care and attention I received.

Despite the lack of feeling in my hand and the significant muscle atrophy, I’m getting stronger by the day. Every single day I do my rehab exercises. I see the guys in the gym, lifting heavy. I probably look odd, doing my 52kg bench press (My 1RM was once over double this!). I rarely wear short sleeved clothing as my left arm is still significantly wasted. I do get embarrassed by it, I’m not scared to admit that. However, every day is a positive.

Every gym session has a purpose – like they all should anyway. I know I am doing my best to get myself back to where I want to be. It could take years, it may never happen, but something is better than nothing.

I recently discovered myelopathy.org, a support group and forum for those with the condition. Their work since 2015 has been incredible and hopefully I can help them in raising awareness into this condition, which can be so debilitating for many. The organisation is dedicated to raising awareness, providing information, and supporting research for the condition. It’s great to communicate with others and some have had much worse experiences than I have. I count myself lucky, but also want to do my best to support others too.

So where does it got from here?

I’m positive and upbeat, but with a sense of realism. I think the initial few months I probably underestimated the condition and the length of recovery. I’ve said many times that one of the hardest things is that it isn’t visible. Apart from the neat scar across my throat, most people wouldn’t know. That can be hard at times. If I had of broken my ankle (thats pretty much fused too!) others would see the plaster cast and know something was up. This isn’t like that.

I had an MRI scan at the beginning of December and this was reasonably positive too. The determining factor will be how I am at the one year post-surgery point in a few weeks. This message has been consistent from the medical staff. It could take longer, who knows. But, what I do know is that I have to get myself to the best possible point that I can, to give myself every chance of full recovery.

I also know that there can be secondary issues post myelopathy surgery and for those who suffer from the condition, but one big advantage I have was the swift action of the neurosurgeon. It is possible that the early the surgery, immediately after diagnosis, may be a prominent factor in the outcome and return to functionality (4).

Overall, I know I have been lucky to have a lot of supportive people around me. I count my blessings daily, others aren’t as fortunate. I want to live life to the fullest, every day matters and counts. Maybe that wasn’t the perspective I took before, maybe it was, maybe it just wasn’t in the forefront of my thoughts. Who knows?

It’s not always visible, but I have learnt that this is ok – those who mind don’t matter and those who matter don’t mind.

A x

References

(1) Nouri  A, Tetreault  L, Singh  A, Karadimas  SK, Fehlings  MG. Degenerative cervical myelopathy: epidemiology, genetics, and pathogenesis. Spine (Phila Pa 1976)2015;40:E675-93. doi:10.1097/BRS.0000000000000913 pmid:25839387CrossRefPubMedGoogle Scholar

(2) Davies B M, Mowforth O D, Smith E K, Kotter M R. Degenerative cervical myelopathy BMJ  2018;  360 :k186 doi:10.1136/bmj.k186

(3) Tracy, JA, Bartleson, JD. Cervical spondylotic myelopathy. Neurologist2010;16:176-87.doi:10.1097/NRL.0b013e3181da3a29 pmid:20445427

(4) Feng, S., et al. (2021). “A systematic review and meta-analysis compare surgical treatment and conservative treatment in patients with cervical spondylotic myelopathy.” Annals of Palliative Medicine 10(7): 7671-7680.

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