Hello Everyone.
Often I’ll google my condition and see if there are any new treatments as living with pain every day is sometimes difficult. I read a thread from some one on here posted this year in June about Tethered Chord Syndrome and thought I’d share my story so you can draw correlations and also see some interesting discovery.
I am 39 years old and in c1996 (23 years old) I fell off a ladder and landed on the base of my spine. My legs went very weak for a minute or 2 and I was in some considerable pain. I was taken to hospital where they Xrayed my back and said I had smashed my Coxsys Bone. I was offered an operation to remove it but on the basis they said the pain may just go away and that there were risks involved I decided to leave it be and like most blokes just got on with it.
Over the next 10 years or so I got annoying twinges in my legs and the odd bit of back pane but thought nothing of it. One morning in November 2009 sitting at my desk at work i developed an intense radiating pain in my right leg. This worried me as this was not the pain I had had before and it really hurt. I went to the doctor and he refered me for an MRI.
The results showed I had not smashed my Coxsys bone in 1996 but I had infact been born with Spinda Bifida Acculta - explained to me as abnormal development of the lower spine. They also stated I had a tethered spinal chord. In lay mans terms your spinal chord connects from your brain to your coxsys bone and has all your nerves attached to it as it travels through the hole in the middle of your spine called the Neural Tube. From about 6 inches up from the bottom of back your spinal chord turns into a kind of elastic run which means as you stretch your chord will stretch and your nerves will run freely through your bones etc. In my case my spinal chord has no elastic bit and compounding things the bottom of my chord, Filum Terminale, has a tumour on it and the inside of my neural tube resembles a rugged cliff face rather than a nicely engineered tube. This means as I move my chord doesn’t and pulls on my nerves, my brain stem and will often develop scar tissue at the tethered site meaning it sticks in mutliple places to the inside of my spine.
What appears to have happened to trigger my right leg pain is my chord has begun to be worn away on the upper surface. This means I am slowly changing my central nervous system and making my pain sensations change. I cannot have phsio as this causes damage to my chord - proven as after 3 sessions I developed a slight neuropathic bladder issue - when you have a wee you think your done and ten minutes later you need another wee.
Interestingly, the tumour I have on my chord has been there since I was an egg so to speak. I am a twin and my twin sister went for a scan to see whether she had the same condition. She doesn’t have a spine issue but she does have the tumour thing although hers is spread through out her but weirdly the volume of cells is identical between us!
In every day life this condition can get you down a bit, i’ve learned to live with the fact that my hips feel like they’ve been glued together, when I sneeze I get violent cramp down both of my arms and into my fingers, occasionally I’ll develop weird headaches across the whole side of my head and randomly I’ll develop intense diarohea. On top of this I get random muscle spasm, the odd loss of spacial awarness and sometime my motor skills drive me nuts!
I did go on drugs for a while but the side affects meant other healthy bits of me were being broken so I came off them.
From my perspective I keep smilling as I know one day I will need some intervention but until then keep a bit mobile a recognising what you CAN STILL DO is really important.
I wish everyone on here all the best and keep plodding on!
Nick