Jeanette, see my reply to Bruce's, as this will give you a bit of my dealings with it, and how it can be caused. And how it has left me forever disabled, and disfigured.
Regards liz
Hi Meg, I am in total agreement with oldbruce, it can reoccur, it is savage and the pain excruciating. I had it at the age of 5, I am 48 now. I have been left disabled from it. It can be caused by either a blunt force action, or a trauma in a persons life. It does lay dormant in our bodies. Then will travel to either where the massive blunt force has occurred to the body. Or to a weaker part of the body.
Regards Elizabeth.x
Hi there Oldbluser,
Yes I empathise with you all the way, miss diagnosed, heel made from my left inner calf skin, growth of right foot stopped at size 1-1 1/2. Leg shorter, leg thinner. Right ankle joint bones have become fused. Scars all over the show of both legs and right foot/ankle area. Knee ops. Constant pain and taking numerous pain medication, including morphiein patches. Massive impact on my life.
Regards Elizabeth.x
Just wondering if any one has had a bone scan which will show where the infection is located in the body. And could some one tell me of their personal difficulties as they grow older.
The reason i would like to know this information is my son was diagnosed with chronic osteomylitis at the age of five. He is now 11 with one leg shorter than the other. So far he has had 23 surgeryies resulting from the complications of osteomylitis. He was non weight bearing for 4 years in a long leg caliber. He learned to walk again. He has been addicted to morphine resulting in me being hesitant to give him anything for the pain that he suffers daily
Hi Jenni, I got Ostio when I was 5, I am now 50. I was in hospital for a year and had tractions on my legs. I was too sick for them to operate on so they used high doses of antibiotics. I could feel the medicine go through my drip and burning in my whole body as it went through the blood, and constant vomitting as a reaction to the drugs. I have never had energy, ever,
I have suffered fibromyalgia and chronic fatigue for 30 years, I know it was from
osteo. The Doctors didnt agree, but im 100% sure of it. I am sure it lingers in your body forever because I have had other illnesses like Epstein Barr virus, pneumonia, microplasma.....It always takes a long time to get over illnesses also and my posture and digestion is also affected.
Its interesting to hear so many other stories of people still suffering inflamatory illnesses long after they had osteo.
Hello all, nice to see this discussion still going. I had osteomyelitis as an infant, still not exactly sure how I got it, no one is... Same like alot of people I cried alot as a baby and mom took me in and was diagnosed left hip and had surgery to correct. It was successful, then came back maybe a year after and went back and it was corrected. This was 1990-1992. I was EXTREMELY active as a child and teenager with hiking, skateboarding, basketball and more. Pain started at 15 or so and was extremely sharp in my left hip and I would get intense migranes all the time. Sharp pains and migranes happened all the time for years, while doctors say a ten is too young for surgery and that the best choice is to wait until pain is unbearable basically and then have hip replacement. I have 1.75inch leg discrepancy and my hip is completely luxated. Everyday sucks but I'm used to the pain like most would be but it's ALWAYS there and I'm 24 now and 25 in November. I'm not as active because the pain can start to get really bad if I exercise for longer than a few hours, and sometimes if I step weird I definately will get a sharp shooting pain in the hip. I got x-rays of my hip actually as just a check up to see where it's at(it's been a few years) and I'll know how it has progressed soon.
-Sebastian
Hi Sebastian,
Thanks for sharing your journey with this horrible disease. I'm 48 now, I suffer terribly with pain where the bone marrow was eaten away. I have said before my life from the age of six and having ostio then has been a painful journey. It's very debilitating, and then the physical things that have happened as a consequence of having ostio well I have to live with day to day. It has effected my mentally also, as because of all the scars and physical things that can be seen, I think no one would want me. Men that is, and I think that when they see my legs and my foot that's the end of any relationship. I have had this in my head since I was young starting to notice the opposite sex . I hope that your journey with this disease has ended for you, and you are able to live a normal healthy life.
Take care
Elizabeth
Hi I had osteo when I was 21 in my collar bone. It took 3 years on antibiotics but eventually they removed the bone. The surgeon left the membrane which created new bone I am now 45 and been pain free until August 23 and was in a car Collision. Reading some of these comments have made me realise that the Dr maybe overlooking the reason for the pain and just suggested physio and heat treatment. So I would like to thank everyone and wish everyone the best in their conquest for a pain free life. X
I caught Osteo 45 years ago and I have fibromyalgia/Chronic fatigue symptoms now. Doctors wont admit its from Osteo but I know darn well it is.
the only thing i could get to kill the osteo because I am allergic to antibiotics is Asprin, 250 mg every 50 minutes for 4 hours as well as taking vitamin c tablets 10 minutes after the asprin will kill the osteo which is a microfilm bacteria. repeat the next day if symptoms persist.
the asprin kills the biofilm and the vitamin c attacks the bacteria.
The biofilm is a thick filmy slimy crust around the bacteria thats hard for drugs to penitrate to the bacteria cell. a bit like a meatball covered in a protected slimy exteria.
As explained in previous post. Had undiagnosed osteomyelitisat 6 months old and lost left hip as a result and hip area was fused. No reoccurrence, and am now 54. Remember osteomyelitiseats tissue, nerve and bone, so the area you feel pain in is probably because it will never be as strong as other hip.You may have strained muscle or overdone things, as you will tire more in that area. If you are still worried ask for a cat scan and for peace of mind osteomyelitis tests. Better to be safe than sorry. You may have to fight with doctors to get these tests, but if you explain your concerns and insist, hopefully then you will stop worrying. Doctors are still remarkably I'll informed about osteomyelitis, so keep insisting. Good luck, I hope this helps you. Regards Debra
Same experience as you. 6 months old and undiagnosed at left hip. Gp told my mum she was been silly and neurotic. By the time it was diagnosed, my hip had been eaten away. Hip was then treated, drained etc, and then surgically fused. Also had leg length discrepancie, loads of awful operatilns till i wax 12 sand a life long hip fusion with all the consequences. Sadly even now gp's and hospitals still seem remarkably ignorant regarding this awful disease. Try my best to create more awareness a use diagnosing and treating early is the key to preventing the devastating destruction it can cause as we know only too well. Regards, Debra
Sebastian, that is also my sons name who was diagnosed at once month per mature of his birth. Born at 29 weeks, weighing 2 pounds and 11 ounces only 14 inches long, he was operated on one month following his premature birth. ( so he was due Feb 22 and was born Dec 7th) operated on January 11th. I was the one who caught the signs of there being something wrong as his right arm was not moving. He always looked like a disgruntled baby,?i sometimes would question if he was indeed mine. Only a day and a half it took the doctors to finally take this seriously and not just write it off as a norm that happens to pre mature babies upon delivery. If ostio on his right shoulder/femer was the cause of a blunt trauma to area, then I'm thinking what could have happened? I delivered c section and he was tiny so while in NICU for 76 days, with a pick line being put in his right leg to give antibiotics three times a day for 6 weeks was a result of a careless nurse not knowing and bringing the attention to doctors, then I've got a serious problem with Kaiser hospital and will not just let this situation go! thank you Liz,Bruce, and all keep your experiences coming as I'm going to use them to help get more research on preventing if I can this horrible illness from occurring to all newborns in the care of hospitals NICU
It was suggested that there was a careless nurse who may have accidentally walked or bumped my hip in hospital when I was born which could have triggered osteomyelitis.
Since your little baby was so tiny and born by c section, could when they lifted him out of you he have been bumped/whacked accidentally I the process of delivering him? You may never know, but may be worth enquiring, I doubt though anyone would own up Maye best to put all your love and energy into helping your baby recover. You are lucky it was diagnosed and treated promptly, because I lost my hip, before it was diagnosed. All the best xx
Hi There all, I came upon this discussion as have started looking into the long term effects of Osteomyelittis due to my current health predicament.
! am 44years old in a months time & was diagnosed with Osteo in my lower jaw at the age of 10, initially GP thought it was mumps, & after treatment for that failed I was referred to a maxillo-facial surgeon who confirmed osteo as the problem. I had multiple surgeries done on my jaw pretty much anually until I was 21 years old, my 'case' even made it into a medical journal somewhere, anyway .. I had what was to be my final surgery 2 days before my 21st birthday & when I woke up from it I found I had been transferred 2 hours away to a different hospital's high dependency unit, a few months [3 I think] of daily Hyperbaric Oxygen Therapy fiollowed.. then my resolve totally took a dive & I had a full blown nervous breakdown which took me 18months to recover from.
Anyhoooo... I got well & got on with my life. Fast forward 20 years & I have now been diagnosed with severe auto-immune disease which is predominantly affecting my bowel - I am now faecally incontinent & have to wear a 'nappy' for want of a better word! .. I also have bile acid malabsorbtion & was just told 2 days ago that I now have diabetes.
hence my research into this matter as my consultant said that my immune system is attacking my body as a direct result of having suffered an infection 'at some point'. He wasn't able to confirm that Osteo was the culprit, but said it was a 'possibility', & seeing as I haven't had any other form of infection during my life I am pretty sure that it is because of having had severe Osteo for 10 years-teamed with the reams & reams of antibiotics I had to take over that time & the painkillers I still have to take to this day to ease the pain in my jaw. I also suffer from fatigue, migraines, weakness & pain in both legs, lower back pain, trouble with concentration..the list goes on!!..
So there's my story .. I personally think that my current health concerns are a direct result of having had such a prolonged fight with osteo in my earlier years, & I by no means wish to scare monger, it's just my personal view.
I'd be happy to hear any feedback, as research into this is difficult.
thanks for reading .. All the best, Jo x
Hi there J.Angelfriend,
I am in agreement with what you have said in respect of the Osteo having had a contributing factor to what you are now suffering with.
As you may have read from my input I still have a lot of issues because of suffering from Osteo at the age of 5/6. And from that age up until my age now 48 have suffered. The scars are terrible both physically and mentally. What I went through in hospital at such a young age I will never forget as long as I live. It was horrendous. My physical health deteriorated year after year. Like you I suffer bad back, hips legs and my right foot. We all have had to adapt our lives to accommodate this horrible disease and the lasting effects it has had on us. And year after year something else adds to that list.
I wish you nothing but good health. Take care xxxxxxx
Hey Elizabeth,
Many thanks for your reply .. you certainly have been through the mill haven't you sweetheart.
The pain I now have in my left lower jaw is manageable- at it's worst in colder weather etc, & sometimes my jaw joint & asociated muscles spasm up..but that pales in comparison to what's happening with my other symptoms.
Thankfully I was diagnosed pretty quickly, & the care I recieved from that point on was exemplary. I was never that scared, but I think that is due in part to only being a child & not really knowing the full extent my prognosis. My parents were a great comfort, & I think for my sake they just kept up the positivity.
I have a 6" scar along my lower jaw, but I've never been overly concerned about it. I'm so sorry to hear that your scar & subsequent disfigurment have caused you so much anguish..so I'm sending you a 'virtual hug'..xx
My mental health declined as a result of the ongoing surgeries, treatments etc, & I have had bouts of depression ever since. As I said in my previous post, My interest in reasearching childhood osteo has been peaked by the onset of my auto-immune disease, & why my immune system is now attacking the systems of my body... my search for answers continues..but I wish you all the very best..keep smiling lovely lady xx xx
Hi there again,
I just want to say a big thank you for your lovely message, very unexpected. To me you seem a very lovely bubbly person that has not let this horrible disease get on top of you. I think any of us who have encountered osteo would be lying if they said it has not effected us mentally in some way as well as physical.
You yourself have your own battles, but by the sound of it you have come out the other side. And seem very positive.
You are a very lovely person, and I wish you all the best and hope that you find answers to your ongoing research.
Thank you for my hug as well. You take care. Xxx
You're very welcome elizabeth ..Hugs work wonders!! .. xx & yes, I do try to stay up-beat - but believe me, [as I'm sure you already know] sometimes it's VERY difficult, we all have to just 'keep on keepin' on don't we.
xx xx xx
debra57,
Thank you for your input. We thought of that being an option and although he was in the NICU for 76 days, anything could have happened although I was there everyday and snapped photos of him daily, literally and as I go back to look at them, the fear of that even happening scares me. I see him sometimes hold his right arm and wonder if it's habit or does he really hurt? Now he is 2 years old.