Patients' Stories

Su's Story

I was diagnosed as having Scoliosis at the age of 14yrs. This was a double curve which was severe. It was advised that I have surgery to correct this as the consequences of not having it done would be unthinkable.

My surgery was to take place a couple of months later. This was a traumatic time for my family and I as my father had died shortly before my diagnosis, and the affects of this were still very raw.

On my admission to hospital I was placed on traction for approximately a month. I also had a myelogram. This procedure was never discussed with my mother or myself, we where not made aware of the risks involved. This was in 1977 when I believe the risks where known and the medical profession was fully aware of the consequences of such a procedure.

I can to this day remember the myelogram injection as it was the most painful experience I have ever had. I had to lay in the fetal position whilst they injected a local anesthetic into my lumber spine - they told me this would numb the area and I would not feel anything after that.

How wrong they were. The Myodil was injected into my lumber spine and it was excruciating pain, my right leg shot up and I had no control over it.( It is making me feel sick just to write this down as I can clearly remember this even though I am 37yrs now - 23yrs on). I was held down and a nurse was telling me I was going to be okay and it was nearly over. (That has now been found not to be the case).

My Myelogram X-rays were not taken that day, I have to lie on the bed the wrong way round with my legs raised to keep the fluid inside my spine - this is what I was told. I slept most of that day and night as I had a terrible headache and it was the only way to get away from it .

The next day I had my X-rays, I was placed on a table/bed and it was moved up, down any which way to get pictures. They came up on a screen. I had my surgery and recovered well from it. I had never had any back pain until this time.

I had had a normal life up until I was 30yrs, the pain in my back had become increasingly worse and at this point I had to give up work and driving, this was a great blow to my self esteem and independence.

I saw numerous consultants and it was eventually found that the Harrington rod that was attached to my spine had come lose from its fixings. The rod was inserted when I had my operation to hold my fused spine in place ( spine fused from T3 to L5). This was taken out and it relieved some of my most severe symptoms for about 18 months.

After this removal I could not walk any distance still without being in pain, but was able to swim 2 miles a week. This helped me lose weight that I had put on previously ( UK size 18+ down to a size 10). Swimming and most things become increasingly painful to do - so I had to give it up, this was a big problem both physically and mentally. I was referred back to a consultant who gave me an MRI Scan. It was found that I had Diastematyelia ( tethered spinal cord). My neurological symptoms were also increasingly worsening.

These were bladder urgencies, weakness in both legs, poor balance, poor circulation and of course increasing pain.

I was referred to a Neurologist who told me there was nothing he could do.

This along with my ever increasing symptoms had made me feel very low and very frustrated.

As to myself I have always had a positive attitude to my condition and its limitations and have always lead an active and fulfilling life, I have adapted my life to my limitations. I have always had no illusions about my condition to this point and have got as much out of life as I could, but now things have changed.

My working back ground has always been people orientated, I have worked with the elderly, mentally handicapped and young people. Now I work with a local advice agency which gives anything from simple advice to legal representation. I am also training to be a legal executive. So I have a fair legal and basic medical grounding.

Therefore you can imagine that when I was diagnosed with having Arachnoiditis ( this was by my Chiropractor) that I started to look into this along with his help.

The signs and symptoms I found in relation to A are incredible. I found that I have 90% of these and all the information written I felt like it was all written with me in mind. Them I joined ASAMS, and found there was many more people out there just like me.

As to my symptoms they are :- Bladder and bowel urgencies and lose of control at times, also I don' t know when my bladder is empty. Pain in both knees - which give way regularly. Poor muscle tone in both legs, sensory lose in both legs, ankles and feet. Poor circulation to feet, this means my feet are always cold and swell with fluid retention. Poor gait and balance. Headaches, Tinnitus like symptoms, Dizziness, Nausea, Restless legs, poor sleep, Muscle spasms and cramps, Frequently feel I m going to faint, Poor temperature sense, photosensitivity, Over stress of other joint and muscle groups, Fatigue very quickly, Constant severe pain and discomfort and Depression.

There are many other conditions that I have, they are marked underlying spinal dysraphic changes, hemi-spinal cords, low lumbar level disc degeneration, grade 1 lumbar level spondylosithesis deformity, lordosis in lumbar spine, also my neck is not in line.

Some personal points I wish to mention is that the pain and depression this condition brings with it are a constant horse race each of them want to get to the finishing line first, the nearer you get to the winning post and think you have whipped one problem into some shape - another stronger horse comes along an brings it s problems with it.

It is a constant, trying battle that you feel if you give up you will lose the race and will never have another chance to do it again.

Without the constant love and support from those around you it would be a long and lonely battle which I m sure would leave most in a morbid state of mind.

I was a born fighter with a sense of humor which I am sure gives me a reasonable positive attitude to life, but I know there are others out there who don t have this strength.