Childhood Osteomyelitis, Long-Term Effects as Adult.
Posted , 42 users are following.
A recent string of events have led me to investigate how osteomyelitis as an infant might have long-term effects as an adult. I've tried to do a little digging around the see if I could find anything, but I've found nothing so far that explains the effects over a lifetime.
As an infant I had osteomyelitis, which was taken care of. The past several years I've been experiencing pain in my upper left thigh while sitting for long periods of time, or even sleeping. I never thought much of it, but a recent talk with my mother made me wonder if it could be in any way related. The area in pain correlates to the place where I had it, and I have not had it looked at since it was taken care of as a child.
So, in short, I am just wondering if anyone knows of any lingering effects of the infection after it's been treated, 25 years after the fact.
4 likes, 97 replies
saeed7899 jennifuhh
Posted
My 4 year son in this January got the osteomyeltis in his left ankle, he was diagonosed with osteo cuased by MRSA and abscess was drained in the first surgery then again after two weeks another surgery followed by 12 weeks of antibiotics, doctors have no idea how he got it as there was no evidet traus, presence of MRSA lead docotrs to belive that it could have traveleld from throught as MRSA is a kind of staph infection.
Now he is recovering and infection hasnt relapsed since we stopeed antibiotics but who knows what happens in the future. he still walks with a limp and feet out, physiotherapy going on but he still feel some pain at teh ankle he gets trired very soon, his feet looks very weak and smaller then the other one but doctors saying this is becuase he had two surgeris so there would be loss of mass etc..
I can share every once feeling here specialy as a father I can not put my pain and struggle in words as how difficult this time is for us, now next fear is what if his growth plate stops growing, I am in to much stress for the past 5 months, I cried, I prayed and did every thing as a father I could.
Day and night this fear is eating me from within that what if this infection comes back or what if his feet stops growing, this fear doesnt let me get relaxed, had several sleepless nights and also those two months when he had surgeries and was not able to walk due to splint stays at the back of my mind asa that was the worst time in my life ever, his crying ans shouting due ti pain whenever they changed the dressing was unbearbale, still haunts me..
I hope and Pray every one with this disease and specially with MRSA gets well soon, sympathies to all the parents and survivors..
Blubbar614 saeed7899
Posted
Hey,
He'll be okay. In time the area will heal and he'll get on playing and getting into trouble just like he should. His experience almost mirrors my own, the left ankle, the unexplained way I got it. His ankle and foot may be a little larger or smeller but this will not interfere with his growth and development. I always found that putting a warm wash cloth under a warm heating pad for 20 minutes or so every hour helped with the pain. It takes time to heal but in time it will be much better. In the meantime, so he can play, you should get him a youth football forearm pad that fits on his ankle. Put it on his ankle when he is playing so the area is protected. Hang in there, he'll do just fine.
Oldbluser Blubbar614
Posted
61 Years of Living With Osteomyelitis And Its After Effects.
I am 69 year 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 in my left ankle 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 from the knee down to include my foot, 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 as my dad was that I was at home. We are now getting into mid to late evening and the doctor 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 world war 2 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 still vividly remember even being only 9 years old during the worst of it being close to death and thinking it wasn't such a bad solution I wasn't at all worried about dying in fact I felt at peace. I have no idea what bought me back but it obviously wasn't time for me to go. It took three and a half years in hospitals with over 100 visits to the theatre for operations which happened on a fortnightly basis. All that was followed by a further 2 years at home. I lost 6 years schooling but it never stopped me from eventually getting out there and living every day as if it was my last, and I still do. I have had three further episodes which were treated immediately with strong antibiotics which worked and yes even though I am now a big tough guy the pain still reduced me to tears until the antibiotics started to work.
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 adverse reaction to the elastoplast bandage 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 with that rubber mask that I can smell now as I write this 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. They would have a good dig around the ankle, debridement and redress the ankle.
The pain on waking from each operation was indescribable. During this time the hole which is on the right hand side of 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 at Hillingdon Hospital 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, after all I had been in there for well over a year and if anything things were getting worse. The smell from my foot could be smelt down the corridors. Between them they hatched a plan that got me to see the worlds most fantastic doctor ever to have lived. Mr Maudsley Orthopaedic Surgeon and a knowledge of Osteomyelitis second to none..
He worked at Heatherwood Hospital in Ascot right opposite the race course.
So after 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 foot to hip which had been on for a year, renewing it every now and then, there were windows cut into the plaster both sides of the ankle so they could replace the dressings on a two daily basis, and my god did they hurt, especially where the dressings had dried into the wound.
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 every single one of them so painful 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 still leaking puss and bone with the smell being still just as bad.
It was decided that I should be moved to King Edward VII 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 yet 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 hard working 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 Windsor 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 no option now.
My left leg was 2 1/2 inches shorter than my right leg and being a teenager then 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, this 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 and my right hip is dreadfully painful after only a few steps.
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 and 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 a handful of pills daily.
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 7 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 100 yes 100.
I always remember an episode of Coronation Street (A soap drama for our overseas sufferers) 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 58 years of life but I have had a happy and full life. I have been happily married for 35 years with a wonderful wife, son and daughter and now also have four beautiful grand children two girls and two boys.
I am forever grateful to those mentioned in this story without whom I would most certainly have died.
My heart goes out to all of you who are suffering with Osteo and the after-effects of Osteomyelitis, the illness that just goes on giving.
Updated 18/03/17
julie7763 Oldbluser
Posted
I've not had a pain free day since I was 11 in 1974. You can read my story about my osteomyelitis and fusion of my right ankle. (((Hugs))) I know the spine pain. I wake up in as much pain as I go to bed with.
julie7763 jennifuhh
Posted
Hi Jenn.
In June of 1974 at 11 years old I tore the ligaments in my right ankle. I had a staph infection prior. They put a cast on my right leg. The foot swelled and toes looked like circulation was cut off. It was very uncomfortable so they cut open the cast to relieve pressure. I began sleeping with my foot in the air and talking deliriously asking God to please stop the pain. Orthopedic tapped my ankle and withdrew pus. I was hospitalized for 2.5 months. They had me on intravenous antibiotics that should have caused my kidneys to shut down and I was told I was one day away from gangrene setting in when the operated to place a drain in my ankle. They initially drained a quart of infection. I was told I had osteomyelitis. My right ankle fused on its own. I am now 54 years old have had severe pain in the right ankle since 1974 but the way in which I walk has messed up my back. I also have degenerative disc disease, curvature of the spine and peripheral neuropathy of both hands from cervical stenosis. I see a chiropractor 2x a week to keep my sanctum untested. I wonder how many of my issues are a result of or related to the osteomyelitis. I'm in *constant* pain and my left knee is beginning to give me issues since it does all the work.
julie7763
Posted
ijeomabiggie jennifuhh
Posted
I had osteomylities at 9 years, I had four surgeries and the pain kept mute and returned last year so severe after 27 years ,I managed mine by staying off sugar cos sugar and any form of infection in the body triggers it.staying away from being over weight help a lot.grinded egg shell etc helps too.the sickness isn't something to wish even an enemy.I still have pains especially when I stand and work for long hours cos the affected leg is tinier and shorter than the other. I just wish there would be a permanent cure for osteomylities
Oldbluser ijeomabiggie
Posted
lindakb jennifuhh
Posted
Hi Jennifuhh, I had re occurring Osteomylitis from the age of 6 til 9 years old. Showed up as a black blob from an X-ray on my left shin. Had 8 operations in total to remove parts of effected bone with one leg shorter (the bad leg longer don't know why ) . Now in my early 50s and suffer pain all the time not in the area where I had the osteo but in that leg in general. I have had Mri, s ,Radiation bone scans ,C.a.t scans and no one can tell me why I have this pain but I'm demented . I have seen numerous specialists including orthopaedic , vascular and pain consultants but all saying they don't know why I'm in pain and they tell me it's nothing to do with Osteomylits. I am taking Durigesic 25mg patched for the past 15 years but pain is always there. The pain I have is also in my thigh and radiates down my leg to my foot . Some days it's unbearable . I could accept it more if doctors could tell me what's causing this pain as I feel they think it's all in my head. . .
catlover88 jennifuhh
Posted
I got Osteo when I was 12 yrs old of my sacariliac joint. It still is a mystery to me because I slipped on some ice. From what I understand there should have been an abrasion for bacteria to enter my body and there wasn't. But reading these terrible stories I was fortunate. I was hospitalized. It took almost 3 wks for the Doctor to diagnose me and get me on Antibiotics but then I got better and gradually started walking with crutches.
What I am wondering now at 58 yrs I have had sciatica problems but now low back problems and pain in that left side where the Osteo occurred. I just have thought it is sciatica but could it be a flare up of Osteo pain and what can be done. It has been going on now for 2 months. I have just seen my family doctor and he wants me to start physical therapy but right now I can't afford my deductible of my insurance.
If I see a specialist what kind of doctor would I go to to find out if that is the problem? I have to work and it is just making it worse. I can't do much of anything or go anywhere where I have to sit because it hurts too much.
I know all of you understand.
erela jennifuhh
Posted
you need to get to an orthopedic specialist or infectious /imunity specialist right away.... I am shocked that you have not been checked upon regularly...... the bone pain in your thigh could be something serious......Hopefully not, but since you were diagnosed with it as an infant you are at risk for it's return...... did you research Osteomylitis on the internet??....... if not I would..... there is so my information out there...... and many people like all of us out there......
I will pray for you and hope you get to a doctor immediately! ... an infection can be treated.......so please go and let us know what you find out!
Always..... Erela
songbird_52 jennifuhh
Posted
I am asking a similar question to yours about lingering effects after osteomyelitis. When living in Africa I contracted osteomyelitis in a knee when I was eight years old. No surgery was done because nobody could work out what was wrong so they kept me on morphine knock out drops for three weeks. They then proceeded to all the wrong things. Back in the UK my consultant was speechless when after a fairly lengthy period of hospitalisation, traction and ( I presume) antibiotics and wearing a full length calliper for some time, he pronounced me cured but was very insistant on me 'never letting anyone go near the joint again'. In my mid sixties I have chronic osteoarthritis in the same knee, the pain is getting to be really bad and I have lost a huge amount of mobility. What I need is a knee replacement but I wonder if that surgery could re-activate the disease. I did consent (foolishly) to an arthroscopy some years ago after which the knee worsened and I ended up with one DVT after another. Clearly I was fortunate that no-one had a clue what to do with me when I first had the problem and no surgery was attempted, otherwise I would been left with many of the difficulties I have read about on this website. Does anyone know whether, after such a long time, the disease could be re-activated as outlined above?
beverly_38377 jennifuhh
Posted
I also had this as a child. pain from hip to toes in rt side . so bad I can't sleep. nothing seems to help.
if course pain meds do. I do not want to depend on them. living with severe pain everyday.
Silent_circle jennifuhh
Posted
I had osteo since I was a few weeks old (through sepsis). This impacted growth of my leg to the point that it was 13 cm shorter when I was 13. I had active osteo as a kid and had several surgeries and hospitalizations to deal with it. I was fortunate enough that it stabilized by the time I got into the famous Ilizarov clinic in Siberia when they extended my leg and basically made it normal.
I was in remission for 30 years and basically forgot I ever had it. Until I had my baby and then it came back with a vengeance. To cut the story short, after several flare-ups and a surgery a few years ago which was supposed to cure me, I've just found out it is back 😦.
So here I am, looking at potentially another surgery and searching for something else beyond the 'traditional' treatments.
So yes, this can come back after years and years in remission. I read somewhere about a case when osteo came back after 50 years. I hope your situation is not like mine, but please keep in mind that it is possible for osteo to come back, unfortunately.
1zero1 jennifuhh
Posted
Hello everyone,
My name is Zero, I'm 19 and I was diagnosed with osteomyelitis around my ankle when I was about 11. Like many others here, it took years for me to be diagnosed as it was always disregarded as growing pains. I was lucky enough to just need antibiotics though, and no surgery. My heart goes out to all of you who had such terrible surgical experiences.
I found this thread when looking for details about the pain even after the infection is gone. I always thought it had to have come back, even though I've had countless blood tests, x-rays and MRIs over the years that show nothing. Because it hurt so much, and has since it first showed up. But I guess a large part of me always thought I was overreacting, that what I was going through wasn't that bad because it was me who was going through it.
I'm aware this thread is very old now, but I don't think I could leave without saying how much of an impact it had on me. I feel seen, validated, and like I finally have some answers. Facing a lifetime of pain like this should feel terrifying, and I guess after a couple of days of thinking about it, it is. But I'm mostly just relieved. I thought something else had to be wrong for the pain still to be here, but that's just how this illness works. And it's scary and it's frustrating and it's awful and I'm sorry so many of us have gone through this and live with it. But I can't help but feel some form of peace; I'm not overreacting, this is real and I'm not alone.
All of your words and stories have really, really helped me. Thank you all for sharing, and I hope you're all doing a little better (or as good as you can with something like this). I hope you've all found something that helps, that works, and that you're having brilliant days.
Much love,
Zero