I have an incomplete spinal cord injury in my neck (C6-C7 level). My symptoms due to my condition are as follows:-
Prior to surgery in 1996 I was suffering pain in my neck, pain and numbness in my arms and a general feeling of exhaustion. I was experiencing difficulty in grasping and holding objects in my hands and had an altered sense of spacial awareness i.e. I would attempt to pick an object up and completely miss it or I would attempt to walk through a doorway and walk into the door frame (quite funny for the first couple of occasions but it's a situation that quickly becomes tiresome to say the least). I was also suffering urinary urgency and frequency and was just prior to surgery dragging my left foot. I was also aware of an electric shock type sensation down my back, arm and legs if I looked down to my feet (L'hermitte's sign). Allied to all these symptoms was a feeling of being generally unwell, as if I was suffering from some sort of virus.
An MR scan prior to surgery showed prominent disc protrusions C5-C6 and C6-C7 (neck). At the C6-C7 level the disc protrusion was compromising the central cord and compressing the right side of the adjacent cord. Some signal changes were noted at this level (In normal language this means the disc C6-C7 was squashing the spinal cord which was showing evidence of damage. I only became aware of this information much later).
I underwent surgery at the Neurosurgical Unit of Hope Hospital Salford in December 1996 to remove the disc C6-C7 and insert a bone graft take from my right hip. I was told that the procedure had gone well and that I should basically get on with the rest of my life. I was not told that I had suffered spinal cord damage.
Immediately following surgery, other than a substantial infection in the bone graft donor site on my hip, my condition did improve and I was able to return to work although I was aware that I would quickly become tired and my energy levels weren't as normal. My condition deteriorated. I was suffering exhaustion beyond anything that I could imagine or describe. This lead to me sleeping for long periods of the day. I developed a substantial tremor in my hands,lack of control of my fingers, pain, tiredness and numbness in my legs and shooting and burning pains throughout my body.
My ability to walk is severely reduced and I have on occasion been unable to stand. I suffer feelings of progressive numbness or a feeling of water being poured down my back or around my buttocks; indeed on more than one occasion these feelings were so strong that I am convinced that I have wet myself even though I haven't. I am also aware that a sudden increase in temperature such as experienced when walking into a hot room or taking a hot bath will lead to a rapid deterioration of my condition (Uhthoff's Syndrome). Allied to all these symptoms was a feeling of bewilderment; this is a condition you can't fight. The more you fight it the worse you get. The only way to cope is to adjust your life accordingly, cut out as much physical exercise as possible and try and reach a state of equilibrium.
All these symptoms are variable and can come and go throughout the day, sometimes lasting minutes, sometimes not abating for weeks. This is an extremely frustrating condition to have. I understand that it is very similar in its effects to Multiple Sclerosis. Apart from exhaustion the other big problem I suffer with is pain. No drugs seem to touch it and even though illegal I am seriously toying with the idea of using cannabis which I believe can be beneficial. I haven't done so yet because the idea of breaking the law, however inflexible it may be doesn't really appeal to me.
I have been told that I have Myelomyelacia resulting in a progressive myelopathy. I am now spastic in both my arms and legs.
I currently take the following medication for my condition:-
- Tizanidine.....this medication controls my spasticity.
- Dantrium .... another antispastic medication prescribed to improve spasticity in my ribs.
- Tolterodine tartrate....to control my bladder and prevent urgency and frequency.
- Amitryptyline ... a triycyclic antidepressant used for the treatment of chronic pain
I was initially prescribed Baclofen for the control of spasticity but I suffered prolonged nausea so this medication was changed to Tizanidine.
I have also been prescribed Gabapentin (which for me was real nasty stuff) for chronic pain. Gabapentin is an anti-epeleptic drug also used in the treatment of chronic pain. I was unable to tolerate this medication. I have also undergone two courses of intravenous Methyprednisolone). In my case this treatment was given over 3 days. Side effects included depression, aggression and a feeling that somebody is wringing your brain out and that you are about to loose control. Fortunately these side effects only last about a week to ten days. Shortly after my last treatment of Methylprednisolone I suffered an anaphylactic reaction. Whether this was due to the treatment or not I don't know but I have since been told that I was lucky I didn't die.
Many of the drugs I take cause a dry mouth I am now suffering numerous dental problems despite the fact I look after my teeth very well.
Luckily I'm quite a resilient sort of person and despite my condition generally enjoy life. It is essential to have the support of family and friends and I consider myself fortunate to have such support.
Since initially writing this page my condition has deteriorated. I now use a wheelchair or electric scooter for travelling anything other than short distances. This has required a considerable degree of mental acceptance on my part but as mobility is important I have had to cast aside my reservations. I have discovered that the reaction of some members of the general public to wheelchair users is incredible. They will talk to the person escorting you about you and not to you and yes they'll even race you to an open door and get in the way as much as possible. I never realised how hard it is to push a chair on anything but a smooth surface or how inaccessible a large number of premises are. I am however, quickly finding out.
One thing I have learned is how very expensive it is to be disabled. Even the slightest thing quite often incurs additional expense, from parking in the centre of town to be nearer shops and thus paying higher car parking costs to having the house adapted. Still I suppose I am fortunate that I have until now been able to afford many of these costs. The main thing is to stay positive.
I am increasingly losing the use of my hands and the little fingers, particularly on my left hand are curling. I am also starting to feel the effects of spasticity in my arms which is at times quite marked. My condition has slowly but inexorably declined. I only really realise this when I try and do things that I haven't done for a while to find that I can't. It's a real sod (please excuse the language).
I had stopped driving but in 2007 took a special driving test for the disabled at a disabled test centre based at Wrightington Hospital. I passed the test which was extremely thorough and now have a restricted driving licence which I have to renew every 3 years.
On 9th April 2013 I had my driving licence revoked by the D.V.L.A. as the medication I take makes me drowsy for about an hour in the morning. I have adjusted my medication regime and my driving licence was reinstated on 29th April 2013 pending further medical enquiries.
In August 2013 I had my driving licence confirmed and a new licence was reissued.