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.
I was just diagnosed with osteomyelitis in my jaw. As I thought back, I have had recurring pain in that area
since 2011. I did some reading and found it can lie dormant. I think another article called them "flare ups".
I didn't copy the references, as I was trying to scan as much information as possible to get a general idea of what I was dealing with.
I don't have a 25 year history, but I am finding this potentially long-term condition to be serious.
I go back this Thursday. I am going to push for an MRI, which I read is helpful. They took a culture in my
mouth to determine the osteomyelitis. I have been on antibiotics since January.
I am always sorry to hear of anyone who has suffered with this painful and debilitating disease.
Read my story 56 Years of living with Osteomelitis and its after effects, Part 1 & 2
I still suffer with pain at the site of the original infection and take pain killers which do help to some extent, worse still are the after effects on the rest of your body that has had to deal with having one leg shorter than the other. My good leg as I like to call it has taken the punishment over the years and the hip in particular has great pain even walking only short distances. I also have a curved spine now which gives dreadful pain in various regions.
I would not wear a built up shoe until I was in my 40s and that is what has caused that damage. I eas given a built up shoe when I was 15 but in those days it was a boot which looked and felt dreadful, add to that the bullying that came with it from the other kids in the school and that was the end of built up shoes until later in life,
I have had 3 further attacks of this disease but knowing what it was allowed me to tell the doctors and not take no from them. Huge amounts of Antibiotics and hey presto within a week it has settled down.
So in answer to your question Yes as after 56 years I still have pain at the original site and in 3 others since leaving hospital when I was a child.
Good luck with it. Mike
Hi there I am comming up to 47 years of age this Friday. I got this horrible disease at the age of 6.having first been told by one doctor who came to see me at home, that I was a good actor and could get off the couch and dance around the room.then after my mum bathed my foot in radox bath salts the back of my heel was like the look and consistancy of blackcurrant jelly.I was visited again by the same doctor, who phoned for an ambulance and was rushed to hospital blue lights flashing. Anyway needless to say mine was late in being diagnosed, I lost the back of my heel and parts of my ankle.this disease has given me problems all through my child hood and as an adult.my foot stopped growing, my leg is shorter and thinner.my good leg has had to have a partial knee replacement.my bad legs knee going same way.my hips hurt and I have pain in my lower back.I have morphein patches but I still have pain.so from age six to present this disease has effected my life.
Hi elizabeth41115
I am with you all the way. Your story almost mirrors my own in every fact.
I think most people who had this illness suffered worse because we nearly all got diagnosed far to late with doctors thinking we were putting it on.
Good luck with the future, at least we lived through it. Mike (Oldbluser)
This is so sad to read. I live in Canada now, but I grew up in England, and at age 9 I had osteomyeltis in my right ankle, Similar story, Doc said it is a sprain, go home and walk on it more. I did, and a few days later my face started turning black and blue, and when my mother came home and reached over to kiss me, her coat brushed my swollen ankle, and the pain was worse than labour (and I have since had 2 kids!). Rushed to hospital where 3 surgeries over 2 days were done (one without knocking me out as my system couldn't handle more anesthetic) That one wasn't much fun. I dont think they ever needed that many people to hold down a nine year old girl before! Leg was saved by GREAT doctors. I do have some arthritis in that joint, but mostly when I wear not the best shoes. I have some great scars too. 
At 40 now, I do also have pain in my left (good leg) hip joint I run, which probably isnt the smartest, and I overcompensate for my slightly gimpy right side. When I run, I wear an insole in my right shoe to boost that side up the bit it needs, which helps I'm not terribly lobsided, so it's all I need. Reading this makes me sad though - I didn't know there were others. I was always told how rare it was, and nobody has ever really heard of it. The long term affects do bother me, and I wonder how things will change as I age. However, we have to keep it in check right? I am lucky as my leg was saved, and I can run, and walk. I could have died, and it sounds like a few others here were in the same boat. So we're lucky. Everyone has something. I worry about the massive doses of antibiotics I receieved, and if they could have damaged my kiver or kidneys. Who knows. I guess time will tell. 
osteomyelitis is a nasty thing , my son had it some 14 years ago , as normal it was not picked up till it was cronic , 2 surgerys in 6 months , and has had a little problem last summer ,the antibiotics worked for him ,thank god .he still has pains every so offten ,when sleeping ,or tired , the cold , he now races a car and does got it knocked now and then ,but wont let this beat him or change his life in any way , ( one day it will as he gets older ) ,this can come back any time , you dont have to do any thing at all , but stress and damage will help ,keep an eye on it and if your worried see your gp ,do tell him why your worried as many gp s put it down to other things . this leading to why it is missed so many times , i was told that 1 in 10.000 got it ,hope this helps
.
hi there, quite a bit of what has been said is so like my experience. i am thankfull that i am alive and did not lose my leg.but as time goes on my mobility becomes harder to do.and my pain levels are worse.when i try to explain how i am or feel i know that it is met by some disbelieve.like you i have cracking scars, but its no just what the eye can see, the pain goes unseen,i would have loved to have been born in a hot country as heat eases it.was nice to hear from someone who lives so far away, but experienced similar to me.
I too had Oestiomyelitis when I was 10yrs old. I do remember the extreme pain in my left heel and the fact that it was 'Glowing' bright red, in fact .
i was lucky to have been rushed to hospital in the morning following the sudden onset of pain the previous night.
i have a 2 inch scar on my left heel where 2 ounces of poison was drained out of the bone in the heel.
The Surgeon (Mr Bedows ) unbelievably had lost his own foot due to having had Oesteomyelitis !! He saved mine and I have not really suffered too badly since , until about 8 years ago having had a prolapsed disc and the nerve in my left leg didn't repair all the way down to my foot . Now my foot hurts most of the time and although it's usually bearable, I feel that my heel feels like I am walking on 'Iron' and it's not nice- much worse when in tired.
David
I'm hoping someone can help because I would like to know as well. My son had ostiomotitis when staying at the NICU for 76 days. He was born at 29 weeks but was not born with ostiomotitis. I was first told he fractured his right shoulder? But how if he was in the care of the hospital? Then further X-rays and C SCANS showed a dark circle. They of course had no idea how he would have gotten it? and why would they automatically say he fractured his bone and tried saying it was because alot of pregnancies and child births come with fractured bones? Crazy I was not born with a fracture not my husband. My son turns one next year and we are scared it may be back, bcus he cries everytime we change his cloths?
I lve in Australia and had Ostia in my left leg when I was 2. A dr Lars operated on me. I have a scar from my knee to the an le. The bone was scrapped and infection removed. I was in hospital for 12 months and wore a iron calipar for about 3 years.
i had another bout when I was about 11' and spent a couple of weeks in the Toowoomba hospital.about 3 years ago I had stones in the kidney and nearly went into kidney failure. I had a small sore on my shin and I was worried about it ulcerating. When they operated to remove the kidney stones they had tropical medicine doctor look at my leg. Surprise surprise the Ostia had come back after 68 years.apparently Ostia is a very lazy infection,the reoccur acne was caused my immune system being weakened by the kidney stones.
after 12 months on antibiotics dr Sugars operated and removed the dead bone
I have to be very careful with the shin as the skin is very sensitive like a babies.
the legs fine , no pain, but I'm experiencing a lot of fatigue. Is any one else experiencing similar fatigue symptoms
My husband had osteomyelitis when he was a teen ager. He stepped on a nail that touched his bone in his right foot. They were able to save his foot, but he lost his right small toe. He is now 58. 4 weeks ago he had surgery to repair a ruptured bicep. 2 days after the surgery he developed terrible pain in both of his knees. They were hot and swollen - which those symptoms have gone away, but the pain persists. He had MRIs done on both knees which show old damage from boat racing. The doctor wants to do arthroscopy surgery on both knees. They did blood tests for gout and infection and the tests came back negitive. I just don't understand why both knees went from 0 to 100 at the exact same time, and I'm looking for somy type of answer. I'm wondering if it was his childhood osteomyelitis. Any thoughts?
Hi Meg
Sorry to hear your husband is still suffering from the illness that keeps on giving. There is every chance he has had another attack of Osteo. I had Osteo in my left ankle, see 56 years of living with Oseto and its after effects. I have had several attacks since then and I stand no nonsense from the medical world as I loeave them in no doubt that it is another attack of Osteo and have been proved correct in all cases, today though with the powerful antibiotics its sorted in days rather than ftrhe years it took when I was a child of 9. You dont say what your husband thinks it may be. Only people who have suffered will ever understand the level of pain that comes with it. Deseased bone pain is as painful as it ever gets.
Give my best wishes to your husband and let us know how he gets on. Mike.
Thanks for your reply. We are both so baffeled and no one in the medical profession seems to be able to give him an explanation or theory - nor do they seem to care. They just want to operate! We are trying to decide what to do next - and are going for a second opinion next week.
Good luck with it, dont accept when they say you can only get osteo once because that isnt true. Please keep us informed how you both get on. Mike..
I'm 72, and had Ostio when I was 2. I have a scar on my left leg from the knee to the ankle.Ostio is a very lazy and lays dormant in your body.
i had stones in my kidneys about 3 years ago. This caused my immune system to fail. As a result the Ostio reoccurred and showed as a small sore on my shin. When the doctor operated on the kidney stones they had a tropical medicine dr swab the sore and confirmed the ostio. I had 12 months on ampicillin and they they operated and chipped out the dead bone. Be aware you will always have the germ in your body. Kind Regards Bruce
Did they say how you got the Ostio in the beginning when you were an infant? And how old were you? One year, two years? My son got it when he was just 2 pounds and after a staff infection caused from a careless IV in his right hand while in care of nurses?
Hi there, I am in constant pain from the area effected by the disease and this is 43 years later. As I go older I have noticed that my pain and mobility are more effected. Not to mention the other parts of my body that it has had a profound effect on. I found a letter a few weeks back that my parents had written and it said in the letter I was going to be disabled later on in life, and how very true this is.
I was 2 when I got Ostio. I had a boil on my backside and the nurse didn't change my nappie. There has to be an open wound for the germ to enter the body. My daughter had Ostio and Schumanns in the spine when she was about 13. The doctors were amazed I knew she had Ostio,I explained i knew from how she described the pain, a trip to hospital and antibiotics fixed her without an operation. But she wore a brace for some time.
Hi Bruce, I got Ostio at the age of five. I had no open wound at all. I got kicked in the back of my heel in the playground. There were no outward signs that I had it. As a result of that fact, when I was in So much pain my mum and dad called for the doctor. I was lay on the cough, my mum holding my leg in an elevated position , even then every single movement from the vibrations just traveled to the back of my heel. The doctor who attended, he is no longer alive, told my mum and dad there was nothing wrong with her, if she wanted she could get up and dance around the room. As long as I live I will always remember his statement. At that he went. Well my mum decided to get me to put my feet in a bowl of radox bath salts. As a result of this all the back of my heel, when out of the water, looked like the colour and consistency of black currant jelly. My parents phoned for an emergency doctor, the same doctor came out and an ambulance was called. I was taken to hospital with the blue lights flashing. No one new what it was. I was put on a tonsil ward. To cut a long story short, as I have already put my story on here, my parents paid for a private doctor. He was a specialist , a bone specialist. He said I had Ostio. The disease had travelled up my leg and eaten my bone marrow away. I got told, years n years later. That it can be caused by a massive trauma to an area of the body, not nessaserily break skin, that can cause it. Apparently, some footballers have had it. But like you say it is treatable. But as mine went un diagnosed for a period of time, it was allowed to spread, resulting in me having lots of surgery. I nearly lost my leg. My foot stopped growing, my leg is shorter, it's thinner. My foot a size 1-1 1/2. My ankle a fused joint, the heel made from the skin of my left inner bottom leg. I'm not going on any further. This should give a bit of an insight into my dealings with it. I have had to have knee surgery, quite a few years ago. I have been left disabled because of Ostio, and nil diagnosis. There were no claims in my day, so that was that. Need I say anymore?