56 Years of Living with Osteomyelitis and its after effects Part 2

Bones, joints and muscles
1

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

2

Hi im Bruce How and you can find me on Face Book.  Iv had Ostomyelities since I was born in 1959 after a problem when being born.  At the monment Iv got a wipping sinas just above my Right Ankel which has been open the morjority of my life.  It did close for about 5 years and then reopend for no reason at all.  I have it in the bone marrow which this is why its taken a long time to find any body who wants to take any action about it.  Im also trying to set up a web site for Ostomyelities suffers as there is not a site which makes it easy to talk to other people with this condition.  There has to be a web site which is easy to use and join and is lay back about joining.  That is why I want to great a web sit which can give suport and to let other people know what new operations that are out the.  Im quit lucky on that side of thing as Iv just got intouch with Oxford center of orthopedic whi  The ch is attached to the univerity which have some ground breaking news which can help a lot with pain magment and they also have conections with Americia and Germany where there is more resurch taking place in to this than there is in britain.  The other thing which Im having troubel with is getting funding for me to see these people let alone getting any thing done.  Any as I said I would like you to befriend me on face Book as then we can talk to each other in a more direct way.  I hope that you will agree with this as im surching for some help in getting this off the ground as this is realy needed.  The sort of site that Im thinking of has to get out to as many people as possible and only that way will we be abel to get more funnding and a lot more reconion.  I look forward to hearing from you on my Face Book page.  Look for living a life with Osteomyelities under grace.  Just gogel living with Osteomyelities and that is all about me  Bruce How  From Mid Wales.

3

a very sad tale indeed but i find it hard to fathem why go through so much pain and other problems why not amputate ?

4

I will get back to you Bruce. Regards Mike

5

Hi David.

I suppose it rather like the dentist who will continuially fill a rotten tooth rather than pull it out.  I was to young to have any input as to what happened to me but there were many children that went through what I did back then and still do to this day.

Thanks for at least taking the time to reply, it at least shows that someone reads our stories.

Best regards Mike

6

Hi Bruce,

My heart goes out to you.  You have had a really tough time.  

I don't think anyone who hasn't had osteomyelitis knows what that pain is like.

I had it in my right jaw and the dentist who caused it told me to see someone else.  I'm in the process of filing complaints with the American Dental Association, the California dental regulatory commission and with any other agency I can find.  

I too wish there was some specialist or website for help.  I've seen a few, but they were not comprehensive.  There is a good osteomylitis doctor in New York, but I don't really have the money it would cost to see him.  I haven't had a flare up in about 6 months, but I know it is still there.  I've tried everything, and just don't know what my next step shoul be.  In the meantime, I'm waiting to hear back from the dental regulatory agencies.

7

Hi guys I'm Jenny I'm 33 and I have just been diagnosed with chronic osteomyelitis in my ankle joint - cuboid and foot.

I'll start at the beginning. 5 years ago dropping my daughter off at preschool a child ran over my ankle on a pushbike. I heard a crunch but as I could walk I just got on with it. Since then my foot and ankle swelled a few times a year and caused me severe pain. I went to A and E each time and was misdiagnosed with a sprain, then eventually told "well its not broken, so it must be a muscle injury go home and rest". This went on for 4 years and atleast 20 A and E visits. Finally, after a particularly bad episode where I was left unable to walk for 3 months - I was crawling around my house - I developed golf ball sized black cysts on the swollen foot. I returned to A and E - the previous week they had told me to go home yet again and not too come back because it wasn't broken and there was nothing more they could do! - anyway I returned, they said it was infected and operated striaght away. My foot was black, half of it was dead from the infection.

They debridged the bone and cut away alot of dead bone. Then told me I had chronic osteomyelitis. I have a huge whole in my ankle bone that they packed - it was agony each time they pushed anything into the whole, I screamed the hospital down despite being given morphione it just didnt touch it. Waking up was awful after the operation I was in so much pain they gave me ketamin which was the only thing that helped, but not for long. Anyway, I was sent home after 2 weeks in hospital. I had daily antibiotic injections that made me really sick and a nurse who came daily to change my wound dressing and pack the wound - god how I dreaded that visit. After 10weeks I could limp about but my foot is still numb most of the time and grey and cold. It doesnt react to temperature and I still cant walk on it due to the pain.

After more tests and an MRI they have now told me they can't treat it because the infection is so bad my foot is riddled with it. The only option is amputation of my foot, or too live with it. I can't live with it, I'm in constant agony. Despite the fact that it can't be healthy living with an infected limb, I worry about it travelling up my leg and having to loose the whole leg. The pain has shifted slightly towards my ankle confirming what the surgeon told me, that the infection has spread throughout my foot and ankle. At the best of times I have a constant dull aching throb and can't put weight on it for more than 1 minute. At the worst I'm screaming in agony. Pain killers seem to do nothing. I now work nights to try and reduce the amount of time standing but even this is getting hard to do.

I'm 33 years old with a 7 year old child that I can't take ice skating, out for a walk or even sit and watch a film with - it hurts more when down on the floor. If they'd have taken me seriously to start with my prognosis would have been so much better. I've decided to let them amputate it, atleast I will have a better quality of life and some mobility which I don't have now. Plus hopefully the infection can't come back if they cut it off?

Its great to hear other people have been through this and my thoughts and best wishes are with you, I wouldnt wish this on anyone.

8

Hi Jenny, Sorry to hear of your troubles. Your description reminds me vividly what I went through as a child.  Had they have left me as long as 4 years before diagnosis I would have been dead.

You dont mention if your in the UK or elsewhere in the world.

I will say that even if you have the foot removed you can still get reocurrance of this awful illness, I know of several people it has happened to.

I wish you all the best in the world for a successful outcome. Please let us know how you get on. Mike

9

You are brave to have come through so many years of Osteomyelitis as you have.   I am now 66, going on 67 if I make it there and have had the horror of horrors since I was 9 years old.

Your scale of pain is right on if not a little on the low side.  Unlike you I did have years free of pain until it hit me again when I was in my early 20s after being wiped out for being a little too good as a netball player.  No hard feelings towards the girls that wiped me out, we all played hard. 

But it did reactivate it again and every now and again throughout my 20s it would attack again.

Initially I had in it my left hip and thigh and in my face,  But my face came up and up after the operation on my hip and thigh so it was treated with penicillin in time and I don't have a huge scar there.  Not that my physical osteo scars have ever worried me.  But sometimes the knowledge that there was no need for all the pain and suffering gets to me.  It was not until the 10th day of being delirious and in extreme pain as a 9 year old that my grandmother visited us and made my mother take me to hospital.   I remember so much of it and yet growing up once recovered I did not want to remember that part.

It has been back with me again chronically on and off for years now but my doctor has, will not recognise it.  I have found that it is useless telling a doctor about it until I am in horrific pain and have an extremely high temperature.  

I believe I am close to that stage now but I am fearful as I also have pain in my shin bone and heel as well instead of where it belongs in my hip, thigh and femur.

I have an appointment for a nuclear bone scan in two weeks but maybe they will be seeing me rather earlier than that. 

Going over to bruce11442 facebook site in a few minutes.  Hope I can find him.

Take care all,  Gwen - from Australia

    

10

Jenny, in my opinion, you must go ahead and have the amputation if you foot is dead.  Yes, you can get an outbreak elsewhere but most likely as it is it would be in your foot or close area. 

It does sound as though you were dismissed as "one of those hypochondriacs" which I believe many of us have experienced.   Doctors are not up on Osteomylitis and they really, really should be.

It is obvious on this forum that there are many of us suffering from this horror of diseases. 

I have recently been diagnosed as having a couple of conditions which I now think I do not have and that all of it was the Osteo - still, again.   I was put on cortisone for my so called conditions and since then the Osteo came galloping like wild horses.

Do what you have to do.  You cannot stay as you are and I really don't know how you could have been working and looking after your child with Osteomylitis, not when it gets to this extent. 

You need help and you are owed it.

Gwendoline

11

Hello Gwendoline in sunny Australia.

Me brave? Far from it I never knew it was going to happen so It was just a case of getting through at the time whatever it was that Osteo was going to deliver me. 

Everytime I hear yet another story such as yourself its the same old thing, the doctors wouldnt listen to what I was telling them and its taken them years to diagnose your Osteo by which time you have suffered unnecessarily for far to long. Everytime I hear someone elses story I always feel they have had it worse than I did in your case to have it in the face must be horrendous.

On the several occasions I have had it since I always make sure that the doctor knows what I am talking about and in each case they have acted on my info I have managed to give them while I sit there crying in pain and the problem has been managed and cured fairly fast.

I have heard and read on the internet that the  use of a hyperbaric chamber which is something that deep sea divers use if they come to the surface to quickly and suffer something called Decompression sickness (DCS; also known as divers' disease, the bends or caisson disease) It has worked very successfully but of course it dosent stop it from returning.

You sound like me in my youthful days as I enjoyed playing football,  only in goal but I enjoyed playing to quite a decent leval. I also used to go horse riding, all this was against the wishes of my mother but I couldnt see the point of sitting there so that I wouldnt hurt my ankle.

The reason for what I suffer now is because I would wear a 3" build on my left shoe, so I now have a bad curveture of the spine which pinches the spinal cord giving me allsorts of problems with my legs and feet in the pain department.

I now wear a build but hate it especially when I know people are looking at it. I never understand how people can be so insensitive and unfeeling. 

I have not heard of a Neuclear bone scan but sounds amazing, please keep us up to date with how it goes and I may live on the otherside of the world (UK) to you but you have all my sympathies and best wishes that the scan reveals exactly what the problem is and that they can sort it for you in double quick time. Kind regards Mike

12

Hello Mike,

I am sure you are brave as is Bruce How who I can't seem to find and anyone else who has suffered from this horrendous disease.  I tried to find Bruce online and I really do want to.  Admittedly even though I joined facebook years ago I just ignored it so have never  learnt how to use it.   If you know how to contact him can you let me know.  He is the one that is really brave to have gone through what he did and still does. 

I was always ready to fight it when it came on before but this time at 66 I am not sure I can.  I am afraid and I cannot remember being afraid before or not to this extent.  I can feel it strongly in my thigh/hip but also right down my left side from heel to face cheek bone.  Plus I feel so unwell with a thumping headache and keep going burning hot and then cold.   I need to go in this week for those blood tests and then Friday week the scans are booked.

Will let you know how I get on.  

There seem to many of us who are baby boomers but I really did not expect to find so many young people on this forum.  It is a disease that supposedly can be quickly cleared up if given the right antibiotics early enough and for long enough.  No one these days who becomes infected should have to go through what us old baby boomers did.  Especially children as doctors in children's hospitals should know exactly what it is.  The doctor that first saw me told my mother off for not bringing me in early on instead of waiting for 10 days.  

Someone said to you why did you not have an amputation and I am sure many of us have screamed out to have any offending bones removed.  I did and meant it at the time although they would have to remove my hip bone up to my waste taking all with it.   But as you know it can attack in other places although I believe mine was deep seated in my marrow bone in my thigh/hip where it drained from for so long.  That in hospital of course with the daily visit from the nurse with the skewer which was pushed into my hip.  I suppose everyone went through that.  It never hurt until it hit bone and I watched the whole blood and pus affair with great interest to the nurses dismay.   

You mentioned how people can be insensitive and unfeeling but I found when I was 9 that children are the worse.  One of the nurses had the genetic problem that caused her to grow to about 8 ft and as I was on a full body frame she was the one to carry me under her arm as if it was as light as a feather.   I cringed with the horror of being a child when all the children in the ward pointed and laughed at her.   I wish I had been brave enough to say something to her.  

I have curvature of the spine but no where near as bad as yours as my left leg is shorter but not by too much.  

Yesterday I received a message that the next time I go in for my finger prick blood test that my doctor has added a list of other blood tests for me and it is less than two weeks since I had a load of blood tests so I am wondering if something has shown up.  He does not believe or hasn't that the Osteo has been hanging around for years and that mostly my body has been able to fight it off.  We know these things because we can feel it and we are the only ones that can. 

I will let you all know about the nuclear bone scan and tell my story

when I have it.  Not too long now but I do feel shocking and not sure I won't be in the hospital before then as I don't feel as if I am fighting it off this time.  

As for the nuclear bone scan I will receive a nuclear injection and then have to wait about 4 hours until it spreads throughout my bones before I have the scans.  This should show up "hot spots" of Osteo in my bones.    The injection is descriped as "The radioactive substance, called a radionuclide, or tracer, will collect within the bone tissue at spots of abnormal physical and chemical change." in the John Hopkins site.

Just Google "Nuclear injections" and you will find all about the scans. 

Nice to meet you Mike.  Take care and do let me know if you know how I can contact Bruce.

Gwendoline