Myelopathy Matters

Back in 2011, aged 44, I slipped a disc in my neck which caused severe spinal cord stenosis which manifested as a condition called cervical myelopathy & bilateral radiculopathy: a neurological disorder that, if caught quickly enough, can potentially be reversed.

Unfortunately for me, due to the insidious nature of spinal cord stenosis, by the time I went to the GP, who adopted a wait & see approach, before sending me for nerve conduction studies testing. I was subsequently referred to the local neurologist, who, in turn, referred me for an MRI scan then to the local spinal neurosurgeon for surgery. I ended up having a C6/C7 Anterior Cervical Discectomy with Fusion/Fixation (ACDF) 1 year and 4 months after initially presenting at my GP's surgery. But because of delays, the damage had been done. Permanent, irreversible spinal cord injury.

Coming to terms with my disability had been devastating to say the least & cervical myelopathy has had a massive impact on my life, both physically and psychologically, not only on me, but on my children too. The sense of isolation has been overwhelming too as I didn't know anyone with the same condition as me, whilst support for people like me at the time appeared to be non-existent. Furthermore it is very difficult for me to make people without such a condition, whether lay-person or professional, understand the struggles that I go through every single day, because once you've had sugery, everyone thinks you are "fixed", which, clearly, is not the case.

However, that's all changing, Back in 2016 I found Myelopathy.org - a group of scientists committed to end the mysteries of Cervical Spondylotic Myelopathy and aslso their patient support group Myelopathy Support on FaceBook. Good thing too, as since then I have made friends with people like me around the world who have told horrendous tales of being mis-diagnosed & suffering missed diagnosis, all too often often being told, like me, that it is "All in you head!"

This cannot be allowed to continue. Late diagnosis leads to permanent paralysis & disability. And that is why I am here - to help raise awareness & campaign for those who feel unheard & hopefully help in the quest for early diagnosis & effective treatment.

[Hidden]

Wow, heartbreaking story with a strong leader! Thank you for forming this team together....we will all be able to thank you one day.. The support group has been a very positive experience. Knowing that research is going on, gives me hope. X

[Hidden in reply to Hidden]

Cheers Margot. As I've said before, it was Iwan who was the pioneer in the group. I had the good fortune of meeting him & other members of Myeloathy Support at the Uni Of Cambridge patient day & joined them. As they say "the rest is history". 😊 Shirley x

[Hidden in reply to Hidden]

I'm so glad you two met that day. What you two have started has been supportive and informative. Waiting does seem to play a part in the progression and , diagnose's of Myelopathy . Did the nerve conduction studies show where the damage was?

[Hidden in reply to Hidden]

Hi Margot. The nerve conduction study was performed, because they thought I had Carpal Tunnel Syndrome, but it was negative for that. A more recent EMG plus nerve conduction study has suggested I have diffuse damage from C5 to T1 level. I am currently awaiting a decision from my neurologist as how best to proceed in light of new radiculopathy symptoms x

[Hidden]

Thank you, Margot. But Jillipa was part of Iwan's crew long before I was - she's been with him practically from the beginning. But serendipity smiled upon us all & here we are x

[Hidden]

Hi there, I was told it I didn't have surgery I could end up in a wheelchair it was bad enough to be told that I was misdiagnosed my head was going round and round I signed there to have surgery and had acdf on c4c5 but now I read your post that fusion is a risk to getting further problems this disease that is new to me I continue to struggle ever day but I'm really pleased to have found this site and if anyone wants advice and support I'm here,I look back and wonder where I would be today without doing my own research and asking my new GP to send me to Walton center.

[Hidden in reply to Hidden]

Hi again

The Walton Centre are excellent so I've heard - we met a couple of neurosurgeons from there when myelopathy.org had a trade stand at the joint neurosurgical & neurology conference in London back in September. They were delighted to hear that there is now a charity that they can direct their patients to for support & were very keen on helping us further & getting involved.

[Hidden]

Hi again. Would you like to hear my horror story and maybe use it to enlightened people.

[Hidden]

I forgot to say the symptoms that it as left me with pain .jerking, twitching, bladder and bowel dysfunction ,calf muscle cramps, tingling, numbness now just in hands, legs feeling heavy, and when I sweat I go freezing in my upper body , but I bear no grudges I'm thankful I'm alive Clive x

[Hidden]

Hi Clive

I've replied to you on another thread. But thank you once again for sharing your (horror) story.

I hope you find our little group on here useful.

Apologies for not replying sooner - I don't always have access to a computer - much easier than trying to moderate the group via my phone.

Kind regards

Shirley

[Hidden]

Hi Shirley, I looked up the vagus nerve and what it does , and I'm a little worried when it mentioned heart , stomach, blood pressure, I have had them still have. My heart they picked up in hospital and thought it was a murmur had ecj everything ok that could be palpation s, stomach when I eat i bloat all the time, blood pressure could be up and down , I have had the swallowing test because of what I told them I'm thinking of asking my GP for a test what would you do. Plus I talked to a man last year who had myelopathy and had heart attack and ended up in a wheelchair with a tracheostomy on