[Bluesman]

Hi,
I would first like to introduce myself, I am 65 years old male and first got Osteo when I was 9 years old in 1958. I live in the UK.
I woke up one morning with pain so bad there were no words to describe just how bad it was. My mother would not believe me and sent me to the Butchers to buy a pound of sausages (She never forgave herself for that) a round journey of about 1 ½ miles. The only way I was able to get there was to hold onto garden walls and eventually crawled on my hands and knees. I wasn’t a big child and a neighbour saw me crawling realised there was something wrong and picked me up and carried me home with those bloody sausages.

I had the pain in my left ankle, I couldn’t bare any weight on it at all. My mother made an appointment with the doctor for the evening but my conditioned worsened during the course of the day and eventually an ambulance was called. I was taken to Hillingdon Hospital Middlesex where I was examined by a doctor who said I was making a fuss about nothing and totally ignored the fact my temperature was rising to dangerous levels.
I am now telling the story by the way from what my mother and father have told me as I am already slipping in and out of consciousness. Despite this the doctor just ordered that the left ankle was strapped up as he thought I might have sprained it in this awful white heavy elasto bandage, it turned out that I had also had a violent reaction to this type of elastoplaster.
I was sent home by ambulance still slipping in and out of consciousness. I am told we got home around tea time, my father came in from work and was unhappy that I had been sent home and called our family doctor who was as surprised my dad was that I was at home. We are now getting into mid to late evening and he said "if he still with us in the morning we will get him straight into hospital"

I must have been the luckiest kid alive as one of our neighbours was a trauma nurse during the war and she volunteered to sit in with me all night and keep me as cool as possible by constantly sponging me down so that mum & dad could get some rest.
I owe my life to that neighbour.
I can remember being so racked with pain and feeling so ill that death was quite a decent option. I can remember not being worried with death.


I was in a coma for 4 weeks and mum told me that when they took that plaster off my leg not only did a whole load of skin come off because of the reaction but when it came to the infected area, the inside of the left ankle the puss erupted so high it nearly hit the ceiling. (I am sure there is some artistic licence there but that's what mum said)

I spent the next 3 1/2 years in hospital. During my stay in Hillingdon I would go down to the operating theatre every Friday (Fish & Chip day the only decent meal of the week) and given a general anaesthetic which would normally mean them pinning me down while I screamed and cried as my veins were difficult to find for an injection and they still are today.
The pain on waking from each operation was indescribable. During this time the hole in my left ankle was working its way right the way through to the left hand side of my left ankle.

Now another piece of luck with another women. We got new neighbours at home and the lady was a Staff Nurse Hillingdon and on my ward.
My mum tells me that she had spoken to her saying she felt that what was happening to me wasn't helping, if anything things were getting worse. Between them they hatched a plan that got me to see the worlds most fantastic doctor ever to have lived. Mr Maudsley Orthopaedic Surgeon.
He worked at Heatherwood Hospital in Ascot right opposite the race course.
So after just over a year of weekly operations at Hillingdon I was transferred to Ascot. I don't know what happened in any of the operations at Hillingdon it just always hurt like hell when I came round.
I am just over 10 years old and now in an adult ward and I stayed in adult wards for the rest of my hospitalisation. My ankle is still painful at varying levels and open on both sides I had a plaster from ankle to hip which had been on for a year or more and there were windows cut into the plaster both sides of the ankle so they could replace the dressings on a daily basis.
I had an operation that was performed by Mr Maudsley who apparently dug out as much rubbish as possible and then fused all the ankle bones together which then fixed my ankle rigidly in one position. This gives rise to a whole new list of problems years later and to this day from the way I have to walk to the way I have to lay in bed with a pillow between my legs.
The pain after this operation was again at levels I wouldn't wish on my worst enemy. After a few days this did dissipate and apart from the daily dressing changes not a great deal happened over the next 18 months.

Slowly and gradually the right side of the ankle healed up but the left side was proving very difficult. Although some healing had taken place there was still a hole large enough to put a golf ball in and showing no signs of getting any better.
It was decided that I should be moved to King Edward V11 in Windsor where there was the possibility of reconstruction surgery which may help the healing process.

Skin grafts and various leg lengthening ideas were discussed but before any of this could take place I took a turn for the worse as the pain returned with avengeance, so its back to Ascot where Mr Maudsley performed another operation after which the pain returned to torture levels. After a few more months it was back to Windsor and again the question of reconstruction surgery to help the healing but my parents thought that by now I had been through enough and that it would be better left to see if natural healing would be best no matter how long it took.

Months passed and there were no more episodes. Thoughts turned to getting me back on my feet. I haven't walked for 3+years so physiotherapy was the new watch word.
After another 6 months of daily painful and hardworking Physio it was finally decided that although my ankle was still not fully healed and there was always going to be a large hole there I was allowed home using a wheelchair.
Back then we had a lovely district nurse that came in 7 days a week to change the dressings also monthly visits to Ascot to see the wonderful Mr Maudsley for the next couple of years or so.
These gradually tailed off and walking became a good way to get about but the pain should that ankle get bent is enough to make you pass out.
Being able to walk long distances was a challenge and has got worse as I have got older. I would never use a stick. I have to now.
My left leg was 2 1/2 inches shorter than my right leg and being a teenager now I wasn't about to start looking any different to the other teenagers so I wasn't going to have a built up shoe.
Back to school after missing over 4+ years was tough, bullied unmercifully because I limped led me to start missing school at every opportunity so my schooling really finished at the age of 9.

I have paid for walking crooked all those years. At the age of 40 I decided that built up shoe was a good idea but my spine was already badly curved.
I cannot stand for more than a few seconds without suffering pain in my left ankle and also my right hip.
My right leg has been worn out after doing all the work for so many years and my spine has curved so bad that it crushes the nerves giving me no sense of feeling in my lower legs and feet but after a day my feet swell up and become very painful.
I have physiotherapy on my spine which is a great help and I also take daily 4 x Co-codamol 15mg
4 x Co-codamol 30mg
3x Amitriptyline
1 x Ramipril 10mg Blood pressure.

Even with all the above I still go to bed every night in pain with the left ankle and swollen feet, in fact when I come to think about it I haven't had a pain free day since I was 9 years old.

Mum and Dad said while I was in Hillingdon I did go down to the operating theatre to have the leg amputated from below the knee and I have thought on many occasions I wish that had happened. I know I would still have had problems with a prosthetic leg but I would have at least walked upright and therefore not had the spinal problems I now have and I would certainly not have missed the daily pain and also the pain should that ankle get bent accidentally.

I have had three other attacks of the dreaded Osteo 1. when I was about 35 in my right wrist. 2. when I was 42 in my right elbow and thirdly about 5 years ago in my right knee.
On all those occasions massive doses of antibiotics stopped it in its tracks but the pain was on each occasion just unbearable. On a scale of 1 to 10 definitely 20+.

I always remember an episode of Coronation Street a few years ago when the character Les Battersby contracted Osteo and it was all over in a few days, how I wished I lived in the TV world where things are cured so quickly.

I should think by now if you are still reading this you must have amazing staying power as all I have seem to do is moan my way through 56 years of life but I have had a happy and full life. I have been happily married for 33 years with a wonderful wife, son and daughter and now also have two beautiful grand children a girl and a boy.
I am forever grateful to those mentioned in this story without whom I would most certainly have died.

My heart goes out to anyone who has ever suffered and is still suffering with and the after-effects of Osteomyelitis.
Mike