Discussions By Condition: I cannot get a diagnosis.

Ollier's Disease

Posted In: I cannot get a diagnosis. 16 Replies
  • Posted By: Hamidss
  • August 16, 2008
  • 01:11 PM

My niece age 6 has been diagnosed a month ago with Ollier's Disease by a Doctor who has already seen this condition in another young patient (Multiple Enchondromatosis). He said there are no current treatments.

Are there any recent breakthrough treatments to allow the growth of normal bone or medication to alleviate the pain?

Any information (Surgery, drugs, cure, ..) regarding the treatment of ollier's disease is greatly appreciated.

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16 Replies:

  • I am a 21 year old male living with Ollier's disease. By receiving the proper treatment and doing what the doctors recommended I am currently living a normal life. Feel free to e-mail me about Ollier's disease, as I know that the disease is rare and information is scarce.-Brian Buckwaltertua29340@temple.edu
    Anonymous 42789 Replies
    • August 22, 2008
    • 08:41 PM
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  • Hi Brian, Having been to St. Thomas Hospital for information and seen two GPs in my local surgery, I came back drawing blank. What a pleasant surprise to see your posting today. I am also glad to hear that you live a normal life. I would appreciate some information regarding the treatment received and the doctors recommnedations. I have emailed you today and hope to be able to contact you soon. Cheers.
    Hamidss 3 Replies
    • September 3, 2008
    • 04:20 PM
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  • Hi Brian, Having been to St. Thomas Hospital for information and seen two GPs in my local surgery, I came back drawing blank. What a pleasant surprise to see your posting today. I am also glad to hear that you live a normal life. I would appreciate some information regarding the treatment received and the Doctors recommendations. I have emailed you today and hope to be able to contact you soon. Cheers.
    Hamidss 3 Replies
    • September 3, 2008
    • 04:21 PM
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  • Hi Brian, I did post a reply earlier but seem to be lost somewhere. My search for information obout Ollier's Disease took me to St Thomas Hospital and a chat with 2 GPs in my local surgery. Result: blank, the information is rare. It was a pleasant surprise to see your post today and have emailed you since. I am glad you are a living proof that you lead a normal life having been diagnosed with the same illness. My brother and his wife have drawn a sigh of relief when I told them about you. This means that there is some from of treatment and a set of recommnedations from the doctors. looking forward to talk to you or receive details on how it went for you.
    Hamidss 3 Replies
    • September 3, 2008
    • 04:44 PM
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  • i am a 52 year old female suffering from olliers disease(just diagnosed) when i was young, this disease wasn't yet named so my orthopaedic dr diagnosed me with osteochondromata which is a general name for what this is.... i had my 1st surgery at the age of 4 & have endured many surgeries to date..... it seems that after a certain age, you develop a tendency to fracture bones that have & or have had a "growth" on them. i am recuperating right now from a fracture of the femur just above the knee...in june i recuperated from a fractured ankle that occurred in december of last year.... am very interested in your experiences! feel free to email me at pngwn208@gmail.com- em
    Anonymous 42789 Replies
    • October 2, 2008
    • 07:48 PM
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  • I was diagnosed at 5 years old with Enchodromatosis (Ollier's disease) in the long bones on the left side of my body (radius, ulna, femur, tibia and fibula) I had length discrepancies in all of these bones, as well as deformity. At 6 (1982) I had my first limb lengthening on my femur using the Wagner external fixator. I gained 2 inches of length, and grew during the procedure so I came out with the same discrepancy after all of the surgery, and my growth plate was damaged. In 1989 at the age of 13 I had the Illizarov procedure performed on my femur, and tibia/fibula at Columbia Presbyterian Hospital in NYC. I was lengthened well over 9 inches and had dramatic deformity correction, but left with a 3-4 inch discrepancy, and a foot deformity from the multiple prosthetic devices I wore throughout the years. I never had any treatment for my arm. I am presently 32 and in the process of having the foot deformity corrected and ankle fusion (it is almost complete) using the Taylor spatial frame, and am going back in less than a month for another femur / tibia-fibula lengthening, and possible bone straightening. That is me in a nutshell, pics and xrays are available if anyone is interested. My current orthopedic surgeon is (Dr. S. Robert Rozbruch) can be found at this site www.limblengthening.com...and on youtube...he is great. As far as orthopedic surgeons go, they correct deformity and help you function, I have yet to talk to a Dr. that strictly deals with the disease. For those of you who are new to this disease, I was always told by my parents that no matter what I had, someone else was worse off. I made it my mantra to never feel sorry for myself, never set a limit to the amount of physical activity I would attempt, and never say I "suffered" from anything. I did everything a normal kid did, from school baseball teams, soccer, softball, football, etc...at times it was tough, I found a way to adapt, and I feel it helped shape me into who I am today as a husband, parent and friend. Keep your heads up, and give it your best fight...feel free to email me with any questions toenlo@aol.com. More should be known and available to the public about this disease, I recently signed up for this site http://www.mdjunction.com/enchondromatosis to try to spread the word.
    Anonymous 42789 Replies
    • October 18, 2008
    • 05:07 AM
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  • Hi, I am 18 years old and was diagnosed with Ollier's Disease at the age of 11. When I was 10, my dad noticed that I limped when I walked, and would always have one knee bent when i stood straight up. He asked me to stand with my knees straight and noticed that my whole body was crooked. We went to my pediatrician who took and xray of my back and hips and incorrectly diagnosed me with scoliosis. We were referred to an orthopedic specialist who after just a short assessment assured us that it was not that my back was crooked, it was that my legs were different lengths. My doctor decided that it was early enough that if they closed the growth plates in my left knee (the one without enchondromas) a good portion of the discrepency could be fixed. At that point my discrepancy was a little over 4 inches... not bad compared to others cases... but it still affected my ability to play sports and live normally. I gained 3 inches, and now have such a small discrepancy that you can barely notice it. I do get pain in my leg that has the enchondromas, but my doctor says at this point the best thing to do is just take over the counter pain medication as needed. I go to get them checked every six months or so to make sure the tumors aren't growing, and so far they haven't. I've learned to just deal with the pain, and I lead a very normal life :)
    Anonymous 42789 Replies
    • December 3, 2008
    • 11:33 PM
    • 0
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  • HelloMy 2 1/2 year-old son was diagnosed with Ollier's disease yesterday. The doctor we saw gave me the impression that his life would be fairly normal, and that this disease would have little affect on him. However, reading information (what I can find) on the internet has me worried. Are deformities/leg discrepancies inevitable? Glad to have found this discussion...Zoe in Durham NC
    Anonymous 42789 Replies
    • February 1, 2009
    • 02:27 AM
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  • I was diagnosed with olliers on 16 june 08,im 36,mum of three,still trying to find out more information on this strange disease,there are lots of questions i have,but visits to hospital are 3 monthly to have mri scans,which i have to travel miles for,do you have any more info on this disease,i would appreciate it
    Anonymous 42789 Replies Flag this Response
  • Thanks to everyone who posted responses about Ollier's disease. My son is almost 10 and was diagnosed at age 5. He has had multiple surgeries for a limb discrepancy of the right leg and so far no Ollier's has shown up in any of his other long bones. My question is to those of you with the disease and how often you dealt with pain. In the last 6 months we have been dealing with alot of pain in his knee and ankle. When we take him to his specialist - of course they do x-rays but with the appearance of the endochondromas it is very hard to see if he has had a hairline fracture or what. In the fall he spent 1 week in the hospital with pain and a source could not be found. They did mri scans, bone scans and eventually an EMG. They came up with nothing except possibly he was having a type of neuropathy and we were told that endochondromas does not hurt. My question is this. Is it possible that he is having growing pains? Did any of you experience those? I am very tall and can remember having horrible growing pains in my legs, also, his brother is going to be very tall and he experiences them on a regular basis. My thinking is the growth plate of his femur, tibia and fibula is affected, could they be trying desperately to keep up with his rate of growth? He is going to be very tall, he is already almost 5ft and just shy of 10 years old. Any suggestions? We are very discouraged at the moment because he is suffering, it is not quite time for another surgery, his discrepancy is around 4cm right now, he already wears a lift in his shoe and we hate having to medicate him so frequently. Did any of you experience this? If you would like to contact me directly my e-mail is rmann33@gmail.com
    Anonymous 42789 Replies Flag this Response
  • All I know of is surgery or bone-grafting.
    richard wayne2b 1232 Replies Flag this Response
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  • Hi my son was diagnosed with Ollier's disease at age 5 and is now 10. He has had multiple surgeries for a limblength discrepancy of the right leg. Mostly he is an active, vibrant little boy who lives a normal life. We followup with a specialists a couple times a year. Our problem now is random pain he has been experiencing that we cannot find the source of. It comes and goes and sometimes can be related to something he has done to injure it. When they take x-rays the appearance of the cartilage tumors obscures whether or not he possibly has a hairline fracture. Alot of the time the doctors are just using guess work to figure it out. We are on hold right now waiting to see how much he grows and how severe his limb discrepancy is getting. He had it corrected by 5cm 2 1/2 years ago and it has now went back 3-4cm. This disease is something he will deal with for the rest of his life and it is encouraging to see other people that can also relate to this rare disorder. Any information about pain that you experience would be helpful.
    Anonymous 42789 Replies Flag this Response
  • Hi! I´m 32 year old woman who lives in Sweden, I was diagnosed with Olliers Disease at 4 year old and have done a number of surgeries to correct my left leg. I have had both Hoffman and Wagner "instruments" to correct the growth and also stopped the growth at the right leg. After being done with the growth problem i´ve had the so cold "malfucci syndrome" with growth on my toes, have taken away five "lumps" (bad english, I know) on them and I have also amputated one toe who I got a fracture on, the toe couldn´t heal because of the "lumps". I live a pretty normal life but I have some pains and due to the first time I lenghtend my leg I can only bend my leg about 80 degrees, I think they messed up a little there.
    Anonymous 42789 Replies Flag this Response
  • Hello my nephew has just been diagnosed with Oliiers disease he is nine years old. They did X-rays on his hand when he was injured in a wrestling match, and it looked like he had broken his fingers. But instead they sent him to a bone specailist after they got a look at the X-RAYS. He has not gotten a full body X-ray yet,, but will sometime this month. The doctor told my brother and his wife that the chances of it turning cancerous were very rare,, but after my research on the internet,, I keep hearing 3 out of every 10 people with the disease are the odds of it turning cancerous. Also I was wondering if anyone could tell me if the didease was always progressive getting worse with age? Or if there is such little information out there that it is hard to tell? I am so glad I found this page,,it is a great thing to be able to connect with those whose lives have been affected by this. If anyone wants to email me my adress is alaska_bunny@hotmail.com
    Anonymous 42789 Replies Flag this Response
  • Hi there!I am 20 years old and I was diagnosed with Ollier's disease age 5. I have had a lot of corrective surgery and now live a 100% normal life. I know a fantastic doctor in South Africa who should be able to assist you. She saved my life...With her help I could excell in literally every aspect of my life.Ollier's is difficult, but with the right Doctors there is hope.Please email me anytime and with any questions : duaandekker@gmail.comYours sincerely
    Anonymous 42789 Replies
    • September 2, 2009
    • 03:30 PM
    • 0
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  • Hi,My daughter is 10 years old and was diagnosed with Ollier's disease around 5 when we took her to the doctor for a lump on her index finger. A full body X-ray revealed she had multiple enchondroma's on her hand/fingers and foot/toes. She had the appearance of lesions on her left femur as well. A follow-up checkup the next year showed improvement in the femur, and at age 10, she's had no problem with the femur. She was living a very normal life until this past year. Last week she broke a bone for the 3rd time in a year. She broke a metatarsul in her foot last December, then broke another metatarsul in her foot in August, then broke her ring finger last week. Each break is directly the result of the disease - occuring where a bone lesion existed. During all these X-rays, what we found is that where the break occured, there was a small "cavity" of bone - this is probably just an area of cartlidge that never turned into bone - leaving the bone weak. The good news is each time the break healed, the "cavity" filled in with strong bone - so the bone is stronger after the recovery than before the break. The bad news is we see many more "cavity" areas that could or will break over time.
    Anonymous 42789 Replies
    • November 16, 2009
    • 05:28 PM
    • 0
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