DAY 1 of trying to type
So after enjoying a family event, I thought I was in a bad flare which was to be expected but my symptoms were just getting worse and worse. The neurological symptoms returned aggressively, worse than before. I knew it was my neck. I’ve typed these few lines and stopped…my right arm and hand won’t work. One week later and I’m back…where was I? oh yes the symptoms. Starting from the top, the side of my face felt like electric shocks intermittently and behind my ears too. My head feels like it’s too heavy for my neck to support so occasionally wearing a soft neck brace helps with that. My shoulders feel like someone is sitting on them constantly; because of this I no longer carry a bag on my shoulder. My arms are so heavy and weak that everyday tasks like brushing my teeth and combing my hair are a real nightmare. The weakness and now the pain (because of typing) in my right shoulder, arm and hand are too severe to carry on typing so I’ll try again later…
My legs feel like jelly and I walk with an altered gait which comes and goes, I can’t use any walking aids because my upper body isn’t working properly and I cant drive. My head will start to shake at random times all of which I have no control over and believe me I’ve tried.
1 week later trying to type this…
I decided maybe I should make an appointment to see a pain specialist again, maybe they could give me a nerve block injection in my neck to help with the symptoms. This was a new guy I hadn’t met before, he was rather abrupt in his conversation, I personally felt he had no people skills whatsoever. After giving him thorough details of my current situation and showing him a copy of my last MRI done in Nov 16, he said “there’s nothing I can do for you, a nerve block injection won’t help”. My heart sank and the tears started to flow uncontrollably. He explained it like this; the herniated disc is pressing on my spinal cord itself, you can block nerve pathways to the brain but not the pathway from the spinal cord to the brain. I think if I didn’t open my mouth again and just got up to leave he would have just said sorry and goodbye.
1 Month and 3rd time lucky…
I said to him, so that’s it? You don’t have any suggestions as to what I do now or where I go from here? He then said, ok what we need to do is refer you to the spinal surgeons at Guys hospital. Why did I have to ask him if there was anything else that could be done at this stage?
I pointed out that I already have a neurosurgeon that performed a successful Micro discectomy on my lumber spine L5/S1 2 years ago this month. So he would be the person I would want to go back to, and a referral was done there and then. About a month later I had been to see my surgeon after having a new MRI done to see if anything had changed since my last one 6 months ago and to be honest it didn’t show much difference. We concluded that conservative measures were not helping, and I told him that the pain specialist said he couldn’t help. Once again for me living like this is severely affecting my ability to function on a daily basis. So it was down to me whether I wanted to go ahead with a very common yet risky surgery. If I don’t my condition would either stay the same which is severely affecting my daily functioning, or get worse and damaged my spinal cord permanently and leave me paralysed. Granted I have had a few moments of rest bite and drove the car for 5 mins or so, but then I’m brutally reminded of what I’m living with.
My surgeon is surprised at the severity of my symptoms compared to what he can see on my MRI, and admitted as surgeons/neurologists sometimes they will never truly understand the complexity of the nervous system/spinal cord and brain. I have joined a few groups on Facebook for support; one of those groups has helped me tremendously called Cervical Myelopathy Support Group, ACDF, Spine, Joint and Muscle Conditions reminding me how much of an advocate we have to be for ourselves when it comes to our health. The two same people could have an identical MRI but show significantly different symptoms. I believe having Fibro really doesn’t help.
Radiculopathy refers to a set of conditions in which one or more nerves are affected and do not work properly (neuropathy). This can result in pain, weakness, numbness or difficulty controlling specific muscles
Myelopathy Spinal cord compression