A DCM Recovery Story

There is flattening of the anterior cord surface with possible early increased T2 signal particularly at C4-5 raising the possibility of myelopathy. Bilateral foraminal narrowing is also demonstrated. Advanced degenerative changes at C2-3 and in the lower cervical region.”

So here at last was the result of my MRI scan. But what did it mean? I had never heard of ‘myelopathy’. What was it? It sounded scary. My rheumatologist’s letter said I had multi-level degenerative disease. He was going to refer me to a spinal neurosurgeon to assess the need for surgery. What was going to happen? 

Sue Leekam

That was in August 2021. By then I’d had symptoms for 14 months that included muscle-aches, stiffness and inflammation. My hamstrings, quads, glutes, neck, hips, shoulders, knees, and fingers were all affected. My legs felt heavy. I could not sit or lie for long, lift the bed covers, get out of bed, get dressed, or take a step without pain. 

I had a long journey of dead-end streets, unable to see a GP in person for eight months because of NHS lockdown rules. I then had endless appointments across the year, including multiple x-rays, ultrasound scans, and blood tests. Rheumatoid arthritis, polymyalgia rheumatica, Lyme disease, cancer (lung, bladder), viral infection, and systemic dental inflammation were all raised as contenders. and were assessed with blood tests, x-rays, ultrasound, cystoscopy, and tooth extraction. Each investigation drew a blank. After seven months, because the NHS waiting lists were so long, I travelled painfully from England to Scotland to see a private rheumatologist, only to be told in the rheumatologist’s letter to the GP “It is difficult to be certain what is going on here” and advised to continue taking the paracetamol. 

How did it feel to be told by the doctors, “I don’t know what’s going on”? I was in emotional turmoil and driven to find whatever solutions I could. These included weekly physiotherapy and yoga. They were the only treatments that I could access without delays when the symptoms started, especially during covid lockdowns. I insisted on seeing an NHS musculoskeletal team. It took nine months to get an appointment.

The appointment with the musculoskeletal team started a new phase. An insightful rheumatologist linked my problems to my neck, diagnosed me with radiculopathy, gave me a steroid injection, and arranged a cervical MRI. By the time I got to the MRI appointment, I’d had a bad fall due to loss of feeling in my foot. I had a fracture and torn ligaments, and arrived at the MRI scanner in a wheelchair. After the MRI, the rheumatologist referred me to a spinal neurosurgeon to discuss the possibility of surgery for spinal cord compression. Not knowing what would lie ahead for the future, my ever-supportive partner of 27 years and I quietly held a civil partnership ceremony two months after I got the MRI results.

Sue and Chris at their civil partnership ceremony

At the appointment with my spinal neurosurgeon, he showed me my MRI scan, including a white area on the scan suggesting spinal cord damage. He arranged a dynamic magnetic nerve conduction study and this showed slight delay of motor responses through my spinal cord on extension of my cervical spine. However, by the time I saw him, my symptoms were already improving. And they continued to improve slowly and progressively across the following year. I now have no symptoms.

Why did my symptoms disappear and will they return? At my first appointment, my neurosurgeon gave me the best advice: “Go to the Myelopathy.org website”, he said. Here I learned everything I could about DCM, including that research on its natural history is still at an early stage. I have learned that asymptomatic spinal cord compression is not unusual, but there is little evidence on when this will progress into myelopathy symptoms if at all.

I feel extremely fortunate that my surgeon is part of the AO Spine Natural History Incubator and that he is super-knowledgeable about early detection and follow-up. However, all the same, the period before and after referral was scary. I felt quite bewildered about what was going to happen, and what I should be doing (or not doing). I was surprised that even an expert neurosurgeon did not know the answers to these questions. I was so keen to grasp at something that I could work on that when I asked; “what should I be doing?” I mistook his answer “the only thing you can do is wait” for “weights”!! So I asked my physiotherapist to help me to carefully build weight training into my routine! And it helped. From my own point of view, yoga and physiotherapy have been a lifeline for my recovery. I started yoga for the first time in my life in my sixties, only months before the symptoms started, so I was still a beginner. 

My yoga teacher and physiotherapist were my constant guides throughout my journey, especially as I had no other medical treatment for 18 months. Each helped me to develop balance, be aware of posture, and to build flexibility and strength. I am also convinced that it was yoga practice that eradicated the pain in my neck and arms. I am a convert and keep up regular practice.

I want to say more about yoga because it has been such a support for me psychologically and emotionally, as well as physically. What have been the gains? The first is body awareness. While I had always lived in my head, yoga gave me the space and time to focus on body and sensation. Feeling breath through your nostrils, the chair supporting you, the movement of a finger, a toe – the importance of those sensory signals for your wellbeing. The second – linked to body awareness – is discovery. Feeling unconfident in my mobility, I was taken by surprise by what I could achieve, the movements I could make, and the enjoyment I could feel when otherwise (outside of yoga) I was feeling pain. The sense of discovery is a hugely positive part of yoga. It is exciting, joyful, playful, unexpected. I also add trust and safety as key factors. Living with pain and the uncertainty of what lies ahead is truly challenging and scary. In yoga there is no judgement; you are in the moment, your balance will wobble, and you are true to what you’re experiencing and its discovery, not the fears you are anticipating. And importantly, you are guided and supported.

Sue and Jessi

I was blessed to be supported by my yoga teacher Jessica Komes, who travelled with me right through my journey. Jessi specializes in body-integrative approaches to mental health. Her academic research, her yoga and psychotherapy practice all include a focus on uncertainty and bodily felt discomfort, and on building experiences of safety, or feeling safe enough.

This is a video of her moving hand meditation. Only your hands move but the rest of your body will feel. Try it.

Will my symptoms return? Will my slight spinal cord dysfunction become worse? Possibly but possibly (hopefully) not. I have remained almost symptom-free now for two years and have appreciated each and every day of that time and look forward to it continuing. 

I first wrote this blog in a draft form six months ago. Since then, a bit of upper arm and shoulder pain has returned in recent weeks, which I take to be radiculopathy. My daily yoga and physiotherapy exercises help me to improve and correct it and I feel positive and optimistic. Whatever the future brings, the best gift I have is a five-year patient-initiated follow-up letter from my neurosurgeon through which I can contact his secretary if there is any change or worsening of symptoms. 

I can’t tell if all my symptoms would have disappeared spontaneously without yoga or physiotherapy. I do know that I have regained a freedom that was lost for me for a short time but is lost for many other people forever. I joined the wonderful Support Group on Facebook and realized that most people are not as lucky as I am. I hope that I will always appreciate what they have learned from their own experiences and passed on to me and others .

Sue in summer 2023