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Childhood Osteomyelitis, Long-Term Effects as Adult.

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jennifuhh
jennifuhh

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

97 Replies

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  • mikayla70615
    mikayla70615 jennifuhh

    Posted

    Hi Everyone,

    I've been looking online everywhere to try and find a discussion group with people who have or have had osteomolitis. I was diagnosed with it when i was 6 years old.. my parents used to think i was mucking around and pretending for attention. I would be walking and all of a seudden my left knee would go stiff and i would be screaming, i wasnt able to straighten my leg. It wasnt until i woke in the middle of the night in what i can remmeber to be the excrutiating at that age and my mum ran in to see what was up, my knee had a red lump and felt extremly hot and i again, couldnt straighten it. I went into surgery the next morning.

    Im 21 years old now and to this day i still get pain in my knee, right where my scar is. Today for example, i went to get up out of my chair at work and my leg felt really hot and i couldnt stand on it. Over the years i have always had pains in it. I've seen multiple doctors and specialists who say its "Just my Joints" regardless of what ive told them about the history.

    Has anyone else expirienced this post surgery and this many years after? Is it worth seeing another doctor or is this normal? (i hope not because it gets quite unbearable at times)

    Thanks in advance anyone and everyone.

    • elizabeth41115
      elizabeth41115 mikayla70615

      Posted

      Hi there Milayla70615,

      I will be 49 this Monday coming, and can honestly say I have suffered with it since I was 6, that's when I was diagnosed. I am in constant nerve pain, and joints also. My bones in my ankle have fused together making walking a painful task. Due to the effects of how my body has compensated for this I have had a partial knee replacement when I was 43. And need one in my other knee.

      This disease has caused constant problems throughout my life. I am on morphien patches and other pain medication, and registered disabled, and use a walking stick.

      Mine was not diagnosed early enough, so when it was, it was too late and a lot of irreversible damage had been done.

      I would like to think you are/will not be like me. But you asked for information and that is my story. I wish you all the best, and hope you have a great future ahead of you.

      Take care

      Liz X

      I like to t

    • erela
      erela mikayla70615

      Posted

      Dear Mikayla.....

      Have they ever done a bone scan on you??..... recently??..... have you ever seen an auto immune specialist???..... this is a disease that does not always go away and can cause other serious bone problems..... if you can.... go to a teaching Hospital and get to specialists that care and know better!

      Take care.... I hope to hear something good from you soon!

      Hugs

      Erela

  • lindsey20165
    lindsey20165 jennifuhh

    Posted

    hey how are you I too was born with osteomyelitis but in my hip and aquired hip diplasia in the process.  Over the years ive had issues with some pain but this past year has been really bad to the point were i fell down stairs and it hurts to walk sleep or do anything so i finnally wen to a doctor then a specialist and had a xray done because of the sickness as a infant my hip bone the ball part and around it are deformed pretty bad up until recently i was ok not perfect but did pretty much anything i wanted too so long story short the xray reveled sorry my spelling is horrible,  it showed that my bone was grinding bone and there was nothing on the bottom of the joint to stop it from progressing and im looking at hip surgury within the next few months to a year pretty scary and because of the deformity of my hip joint its gonna be difficult and could go wrong im only 33 i feel your pain on all this its miserable and hard too sleep and none will understand till there in your shoes i would deffinatly set a appointment with your doctor too see a specialist too have it checked out it could be serious or something they can fix with therepy but deffinatly dont wait i would call asap and good luck i hope everything goes well for you .
    • erela
      erela lindsey20165

      Posted

      Dear Lindsey....

      I had my right hip totally replaced in 1986 when I was 28 years old..... so.... I think it is amazing that you have fought the pain to 33......do not worry about spelling correctly..... get the total non cemented hip as soon as they can get you in...... are you in the UK??..... make sure you get a week of hyperbolic therapy afterwards.  I am now 60 and my hip replacement is broken and worn out.... but my bones are too sick and I cannot get any of my joints replaced..... you need to know that at the age of 33 there are NO lifetime replacements...... trust me.... they told me my hip would last a life time..... HA.... now they admit it doesn't.... pick the hip with the longest expectancy....... you will not be able to run on it.... but you will walk without pain...... and you will have a better life.....

      Don't be scared...... I will be praying for you and sending you hugs....

      Always...Erela

  • ijeomabiggie
    ijeomabiggie jennifuhh

    Posted

    Ihi I'm 36 now , I has osteomyelitis at the age of 9 , that is after 27 years , the pain I have been havin for the past two weeks has been so unbearable that I can't even sleep at night, this pain has defiled all pain killers and I'm hitting the hospital tomorrow for solution. I've been to Israel for middle and even In Africa but these drs keep saying that overweight is the reason for my pain while the other leg doesn't hurt ,just the osteomyelitis leg.I was give a couple of anti biotics while I was in Israel and after a while the pain disappeard then in 2012 but resurfaced in 2016 that's 4 years later.it's common it keeps coming. After tomorrow I would give it a quaterly check up for life.yours isn't strange
    • erela
      erela ijeomabiggie

      Posted

      have you had a recent bone scan or been to an auto immune specialist..... you mention Israel..... is anyone in your family a Nazi Germany survivor...... if so.... you need to research the "Niktor" project..... I suffer from radiation sickness because my mother was exposed to radiation before she left for Palestine on the Exodus....... my mother should never had children.  Radiation Sickness is very well researched in Israel..... and even more in Japan as they had 2 radiactive bombs dropped on them....... they children born with Down's Syndrome and or Radiation Sickness due to those bombs....... my brother has Down's Syndrome.... I got the Radiation Sickness which has eaten all my joints.....  If antibiotics actually improved your situation I think you may have been misdiagnosed....... if so you should research "Hyperberic" therapy..... oxygen therapy helps the bones regenerate....... I would go back to Israel....with a complete family history and get a bone scan and see their auto immune specialists.......

      praying for you and hope you will keep me updated!

      Always........Erela

  • janice_38894
    janice_38894 jennifuhh

    Posted

    I had osteomyelitis in my left hip and right shoulder... Apparently I picked it up in hospital just after I was born....my left leg and right arm are 3 inches shorter....I suffer terrible pain.....I have curvature of the spine also.....I find it difficult to do alot of things...but the worst is the pain....I'm on painkillers now and most likely be on them for the rest of my life.I believe osti has weakened my immune system and shortened my life span.....I get sick often...colds flues infected ears,all sorts....also had golden staf.I am finding hard to get antibiotics to work.... But it could be worse:-)

    • jeannette1209
      jeannette1209 janice_38894

      Posted

      Do you remember having pain as a child? Did it ever reoccur? When you first contracted it at hospital they did surgery to remove the bacteria and how soon after did it show up again?

      My son is who I'm also concerned with, and the spine thing i see his spine curving and I'm always trying to correct his posture. He is only 2 1/2 years young sad

    • janice_38894
      janice_38894 jeannette1209

      Posted

      When my mother brought me home from hospital, she knew.something was wrong.every time she went to lift my legs to change my nappy I would scream my head off....at first doctors didn't believe her... but they had no choice my mother made them xray me,then the whole hospital went in to melt down....everything was cleaned from top to bottom...my legs were put into plasta waist high...mum was told to take me home and enjoy what time she had left with me...but I'm still here..I remember at school I was always getting into trouble because I couldn't sit sill and still can't, because of pain..... And it wasn't until I was around eight years old that they noticed my right arm was shorter....I didn't have any surgery just lots of penicillin....
    • tab91
      tab91 jeannette1209

      Posted

      How is your sons spine now? My son had it in his spine at 19 months old he's now just over 2 and has been in a spinal brace basically since (I think it's called a poly jacket) the reason for this is because he's bone that was infected collapsed and his spine was becoming curvy.

    • erela
      erela janice_38894

      Posted

      my heart aches for you Janice....... and all of us that have to deal with 24/7/365 pain...... it is so hard.

      Have you ever considered "hydrotherapy"..... when I could get in and out of a hot pool I would spend hours in the water..... I would have slept in the water if they had let me..... Hell I would live in water if I could....

      Get to an auto immune specialist as soon as you can..... a teaching hospital would be best.  In California that would be UCSF or Stanford.....

      I will pray for you too Janice..... and I look forward to hearing from you and any progress you make!

      Hugs....Erela

  • ala64043
    ala64043 jennifuhh

    Posted

    Hi

    I had osteomyelitis in my lower back vertebrate when I was 9-10 years old. My mother explained to me that my health was never the same again. By the time I was in my early 20s I needed regular physiotherapy for back pain. I was eventually diagnosed with fibromyalgia for which I have been treated for the last 30 years. I am now 52. If I don't take medications and or obtain trigger point therapy (injections) - I cannot stand up in the morning. I need to continue to exercise to keep muscles strong and this also manages the pain. Its not easy but it is manageable. 

    • ala64043
      ala64043

      Posted

      I cannot find any literature correlating childhood osteomyelitis and possible side effects later as an adult - such as fibromyalgia. Every so often I look to see if anything has been reported - hence my recent find of your post. In journals there is nothing about follow up of children as adults to measure potential life affects. Indeed the hospital where I was treated no longer has my case information.
  • rick95164
    rick95164 jennifuhh

    Posted

    I had a severe case of osteomyelitis at the age of 9 I had to have surgery and bad marrow taken out and replaced and a rubber Tube before that was hanging out of my left hip for 6 months I was in the hospital for a total of 11 months. I suffer from my left hip locking up all the time and when I go to turn it will feel like I have been stabbed in my left hip and if I sit for more than 25 minutes it is very hard and painful for me to get up.
    • Oldbluser
      Oldbluser rick95164

      Posted

      58 Years of Living With Osteomyelitis And Its After Effects

      I would first like to introduce myself, 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, 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 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 neighbors 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 anesthetic 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.

      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 ankle 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 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 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 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 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, 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.

      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 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 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 18/03/16

    • ala64043
      ala64043 Oldbluser

      Posted

      I hear ya! yes I have had a full life - just looking for evidence from others that ostemyelitis appears to be life long in another way. I was told that I developed fibromyalgia as an 'autoimmune' disease following the osteo but there really is not much about this !

      cheers

       

    • Oldbluser
      Oldbluser ala64043

      Posted

      They is so little known about Osteo that they cant actualy diagnose it quickly and easily when its presented too them They often say the child is making a fuss about nothing as in my case and many many others and there lies its biggest danger as the illness is allowed to carry on causing life threatining situation and lost limbs. Only 1 in 5000 actualy get it so its quite a rare problem and some doctors and nurses can go through their entire carrear without seeing a single case. I also have a feeling that  other illnesses such as MRSI and other flesh eating disorders are lumped in with the Oseto sufferers and that just clouds the whole understanding of what Osteomyelitis actualy is.
    • ala64043
      ala64043 Oldbluser

      Posted

      Yes- just reading more posts again. It took them 2 years to diagnose my osteo in my back- my back is getting worse. It seems that because everyone's osteo experience is so different- so are the after effects in life. Slow diagnosis is a big issue also

    • erela
      erela rick95164

      Posted

      Dear Rick.....

      Ouch..... I am sorry we are members of the Pain and Messed up Bone Club... truly I am as I am in the same situation.....

      do you know about the Human Touch (manuf.) Zero Gravity Perfect chair???  I have not slept in a bed in over 15 years as I cannot lay flat as my hips and back lock up and the pain to get out of the bed is beyond screaming...... I have slept and lived in these chairs for 15 years...... I think I would have blown my brains out otherwise.    La Fuma in Canada makes a portable Zero Gravity Lounge Chair..... I have this too as I cannot sit in regular chairs or couch as my legs go numb and I fall on my face!! lol.......  also hot indoor swimming pools when I was able to get in and out would bring hours of relief..... maybe a hot tub (bathroom kind) with a soak of Epsom Salts, Ginger and Cummen....... that is good too.....

      Edible Lavender will help you relax when Panic / Anxiety attacks are triggered by the pain......  God's medicine Cannabis....in foods is amazing too..... eating cannabis in foods works on the body.... smoking on the brain...... I like my brain clear so I can be a brat!!!....

      I look forward to hearing updates from you...... I do so pray that they can do something for you soon...... sounds like you might need a total hip replacement.... I had one at 28 years of age..... I am 60.... it is broken and worn out.....you may want to consider this..... I have researched hips..... while non is a lifetime hip..... there is a ceramic hip which is a 30 year fix...... if your bones are healthy would look into this option as it could end your pain!!!  you would be able to dance.....and walk  free of pain..... I wish this for you!

      Take Care Rick.....Erela

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