My story so far

[Chrisriley]

Suffering with Myelopathy

Fourteen months ago i started having electric shocks from my neck to my feet every time i turned my neck or looked upwards weird feeling i thought. Put it down to having my neck bent back sanding and painting a ceiling for four days. This feeling went on for a few weeks me getting slightly worried having done a google search thinking i may have ms then my arms and hands started feeling numb and tingly so went to my doctors and she said it may be a trapped nerve and told me to come back in a month if things hadn't improved. So five weeks later things were getting worse with clumsy hands and my balance was affected so went back to doctors and sent me to the hospital for blood test xray nothing wrong there so had mri scan on my neck which showed my spinal cord was being compressed so she referred me to a spinal clinic and got told that i need an operation to fused c3 and c4 together otherwise i may end up paralyzed so no hesitation went through with it. From having first symptoms up to the op was eight months surgeon told me it wasn't a fix but preventing things getting worse. My journey through this has left me with depression anxiety and fatigue. I have feeling back in my arms and hands only slight numbness and balance is normal but another symptom was bowel urgency which is still the same. I'm trying my best to lead normal life now take what ever challenges come my way.Read less

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Hi chrisriley, sorry to hear about you I have the same and it isn't nice it took nearly 20 yrs to be diagnosed correctly I have all the same symptoms and still have I had acdf c4c5 like you say the op is to stop it getting worse sometimes it is to late I'm 5 yrs since op and nothing as changed you have to manage it best you can good luck ,if you want to ask anything get in touch

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Hello there

What you describe are all the classic symptoms of myelopathy. The electric shocks are L'Hermitte's sign.

I struggle with fatigue too. It is my main problem - even more so than pain. I am 6 years post op following an C6/C7 ACDF. I am please you were seen & treated relatively quickly. Ideally 4 - 6 months is the optimum time to stand a chance of a full recovery, but due to the shortage of spinal surgeons in the NHS , the waiting lists are longer than desirable.

Urge incontinence of both bowels & bladder was a problem for me too. I currently take duloxetine for nerve pain but also to keep my mood stable & also baclofen as a muscle relaxant. A side effect is that I am less likely to have an accident now, although my bowel function is so slow , I need dynorod to clear the loo each time I go because I actually block it. Apologies for too much information, but that is exactly how it is.

I too became very depressed. Myelopathy is a rollten illness because it robs you of the future that you thought you would have, so it is very easy to get stuck grieving for the future that you were hoping for, Do speak to your doctor about how you feel. I myeslf needed counselling & medication to help get to a place of acceptance, but I'm on the other side now, in a good place, so it does get better. How long that takes is a very individual thing.

As for fatigue, that is a tough one to crack. Pacing yourself, doing little & often & not over doing it will help. I have to sleep during the day to recharge, but it is still difficult. Delegate as much as you can & simplify your life - let you housekeeping standards slip a little if you need to because you can't do it all.

I hope you found this helpful.

Do post again if you feel you need to

Shirley