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Patient Stories - Monica Mahon

Delaying surgery was my worst decision, says Monica

Myelopathy Support member, Monica Mahon, 56, shares her experiences of DCM.

My story began in 2013 when I started noticing numbness in my hands and feet. It began with little things like not being able to do up small buttons or put on jewellery as I couldn’t manipulate the catches.

portrait of Monica Mahon

Around the same time, my balance began to go a bit ‘off’. I had one or two falls and also noticed my manual dexterity deteriorating. I began dropping things and cutting my hands and feet on slipped knives while cooking. When I realised stubbing my toes induced no pain, I started to worry and went to visit my GP.

I was immediately referred to my local hospital for an MRI scan. This was followed by an appointment with a consultant who told me I had Degenerative Cervical Myelopathy (DCM) with stenosis.

Spinal surgery terrified me

I was so relieved that I didn’t have Multiple Sclerosis or Motor Neurone Disease that I didn’t really take in what I was being told. However, there was some discussion about spinal surgery, which terrified me. As a result, I made the worst decision I could have done. I opted to defer surgery.

No-one told me just how quickly things would get worse. Soon my gait and balance became awful. I fell often – breaking my wrist, fingers and nose. I did not really understand what was happening to me. There was so little information available.

During this time, I moved home and my new GP referred me for a further scan and to a new neurosurgeon. The neurosurgeon was adamant I needed ACDF (Anterior Cervical Discectomy and Fusion) surgery as soon as possible.

I had always been a very active person. A dancer in my teens and twenties, a regular swimmer, a mini-rugby coach and walked miles with my boys and the dog. Now, waiting for surgery, I was walking with a cane and permanently exhausted due to insomnia. I became increasingly anxious about going out as I feared falling. The thought of undertaking journeys just fuelled my anxiety and led to panic attacks. Depression and isolation made this a self-perpetuating cycle. I was at a very low ebb.

Other people like me

Then I found Myelopathy Support on Facebook. Finally, here was all the information I needed. Medical information, case histories and, most importantly, other people just like me. I discovered the utter relief of talking to others who understood and were able to relate. What a revelation. And I was able to attend a patient information day, at Cambridge University, where I met several members of the support group and the Myleopathy.org team.

After a wait of approximately six months, I had my ACDF (C5-6) surgery in January 2017. I felt very scared and anxious, but I needn’t have worried. The operation went well and I was out of bed and in the shower the following morning. Forty-eight hours post-op, my son was able to drive me home. Minimal pain relief and lots of ice-cream was all I needed. I now have a little scar that is almost invisible.

Two years later and I still walk with my cane looking a bit like a drunken sailor. I cook very little as knives and hot dishes are difficult for me to handle. I try to keep as healthy as possible. Leg disconnect days make planning things quite difficult. I have lost count of the appointments, special occasions and events I have missed.

I have learned to live with my continuing insomnia helped by cognitive behaviour and relaxation therapies. Depression and anxiety will always be with me, but I am determined not to let DCM define my life and beat me. I am one of the lucky ones as I don’t have the chronic pain experienced by many DCM patients.

I am now a member of the Facebook Myelopathy Support team. I try to keep my contributions light and upbeat with, hopefully, some practical advice thrown in. It is my way of offering support to others.

Life doesn’t end with DCM

My hope is that through our charity, Myleopathy.org, information will be disseminated to GP’s, health professionals and patients and diagnoses will make for better outcomes.

It would be so great if, in the future, we could have a drug that could prevent people needing surgery for DCM. And if genetic and hereditary links were ever discovered in DCM we would be able to protect our children and grandchildren.

We live and learn and for me the old saying, if only I knew then, what I know now, is so true. A big heartfelt thank you to Iwan Sadler, the founder of Facebook Myelopathy Support. It has been an enormous help to me and my family. Thanks also to all the hard-working team at Myleopathy.org.

And lastly to any of you out there reading this. Keep on fighting the good fight. Don’t give up. Life doesn’t end with DCM – it’s just different.