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Living with Ollier's

Mummakaren
1 Recommendation

My name is Karen and I have Ollier's disease. I am 36 years old now and have never had the chance to talk to any one else who has it as well.
I started having surgeries when I was 10 years old and about one a year after that. All of the operations I had a child I have had to have all over again. The cysts have all grown back. I only have it in both of my arms.
I would LOVe to be able to chat with someone else who has gone through what I have gone through.

Explore topics in this discussion:

Cancer Chondrosarcoma Surgery Cataract Ollier disease Prostate cancer

6 replies

julia101

Hi Karen,
I was diagnosed at 36 but started having problems at the age of 10 but noone could tell me what it was. I have it in my femor, tibia, and pelvis and awaiting xrays on my fingers now.
Im on here daily now trying to find information on the disease. Keep us updated and take care.
Julia

Mummakaren

I have found it much easier finding information with the internet than the way I started at the medical library. There are all sorts of web sites that can help you

tuesday1965

Thank you so much for the info on your condition. My grandson age six was diagnosed three years ago. He goes in for his first surgery Dec. 13th. He fractured his finger and being a boy that nothing seems to slow down has had a hard time healing without a cast. Will they leave the cast on his hand after the surgery until he completly heals? Thanks to all of you who take the time to answer questions and give advise to people like me. Laurie

Slummymummy2

dear group.... Hope we are all smiling today and keeping ourselves cheery and not having a bad 'olliers' day, as we should not let 'olliers' get the better of us. Sorry about the fighting talk but sometimes you have to say things out loud , and not mutter to ourselves, we have to stay strong and fight, and keep the website full of info, as we find it.
Harry, my son aged 16 and 6ft tall, with a shock of ginger hair, has a referal date 4th november about his olliers, and we will go into the doctor at 'birming royal orthapedic hospital' ( england ) and speak with the consultant, hopefully, robert grimes, about his pelvis and hips and mainly his upper left humerous... so fingers crossed.
My dad had an excellant result today, about his prostate cancer, it has shrunk after months of injections ( deep into the stomach ) and he has been offered radiotherapy at the age of 78, so we have to get an operation in place this side of xmas for his cataract, as he will be too poorly to have an eye op after 7 weeks of radiotherapy in march... so life sometimes lets you stroll along in the gentle summer breeze, or a forced march up a very steep hill in bloody cold blizzard conditions...
So ladies.... we will keep marching and let the wind try to blow us down, but we will never give in and finally we may stroll along again, with our loving family and friends.... god bless .. love to you all and nite nite...
ps My birthday today. 45 years old.... and what a good day for my dad aged 78 .... xxxxx

Mummakaren

Multiple Enchodromatosis (Ollier's Disease)


- Discussion:
- originally was described by Ollier in late 1800's;
- characterized by multiple enchondroma lesions primarily located w/ in the metaphyseal regions of tubular bones;
- usually diagnosed in childhood;
- pts w/ Ollier's dz have increased risk of a secondary chondrosarcoma developing later in life;
- risk is about 25% by age 40 yrs;

- Clinical Findings:
- most pts have bilateral involvement, w/ predominance on one side;
- enchondromas most frequently involve the short tubular bones of
hands and feet as well as long bones of upper and lower extremities;
- development of palpable masses, angular deformity & growth disturbances
resulting in angular deformities & leg length discrepancies;
- limb length inequality may be of sufficient severity to require surgery;

- Radiographs:
- in most cases, there will be diaphyseal lesions or metaphyseal lesions which do not cross the growth plate,
at least, not until growth plate closure;
- in some cases enchondromatosis will affect patients in the metaphyseal and epiphyseal regions;
- when enchondromas cross the growth plate, severe limb length deformities and angular deformities will develop;

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