Osteochondromas / Multiple Hereditary Exostosis

Nikki - posted on 04/19/2012

Hi I am 30 and have hme. My dad and uncles have it as well. Growing up with mhe was very painful, I didn't officially get diagnosed until I was 27 but my family always wondered if I did but my grandparents were told it only affected boys (we know better now) so no one ever looked into it. I remember having severe growing pains so bad it was hard to walk, I could never sit Indian style like the other kids, I always walked and ran a little funny and I was very knock-kneed. I have hundreds of little bone tumors especially around my growth plates and my long bones are slightly bowed. I am also very short, 4'10. I have never had surgery even though I should have. The doctors won't do anything now because I've compensated for my lack of mobility in my hips. My dad and uncles on the other hand have had several surgeries to remove tumors. My one uncle even had the cancer associated with mhe. The good news is that there is a lot more information about the disease than there was when I was growing up and there are lots of options for your daughter. I've always said if I have a child with mhe, I would do whatever surgery is necessary for my child to reach their full height potential and to live pain-free as an adult. Luckily my son tested negative but I am now pregnant with my second child. I know quite a bit about the disease if you have any questions, there are also a few websites and support groups on Facebook, is link to them for you but I'm typing on my phone so I can't. I hope the best for your daughter :)

Susanne - posted on 02/01/2010

My niece had cancer when she was six and my sister used to tape the consults with the docters so she could listen to them again at home and look up what the technical terms meant on the internet. She said it was the only way she knew what was happening lol.

Amy - posted on 01/30/2010

Exactly...I am usually like, "Can you break that down into english for me?"

Susanne - posted on 01/30/2010

Wow thats scary, to be honest i think the docters dont tell you half of whats going on and if they do i dont understand half of what they say.

Amy - posted on 01/29/2010

The doctors never mentioned cancer to me either but every article that I have read about it, since her doctors all gave this a name, say the same thing. They did tell me tho if she starts acting like they are painful to let them know asap. After reading if they get painful it could be causing other problems or turning malignant.

Susanne - posted on 01/29/2010

His consultant never mentioned cancer in the future the only thing he mentioned was because the one bone is doing the work of two its going to wear out quicker and he will probably need to have an operation in later life probably in his forties or fifties if he looks after it now.

Amy - posted on 01/28/2010

Sound just like what I have read. If it becomes painful then it could be becoming cancerous at that point or if any come up after their bones stop growing it could be a bad sign. Well I wish you luck with your case.

Susanne - posted on 01/28/2010

Yeah i noticed he had it when he was 1 i took him to the doc and she said it was ok. By the time he was three there was a big lump on his arm so she referred him to the hospital they x rayed and sent all his info down to great ormond st hospital. Hes had a check up and xray every year since then. They said this time that he doesnt need to come back unless he starts having trouble with it.

Amy - posted on 01/27/2010

It sounds similiar to my daughters arm. Did they do x-rays?

Susanne - posted on 01/27/2010

I dont really know what my son has the doctors have said there isnt a name for what he has but its some kind of cartiligenious dysplasia basically his arm has grown wrong the smaller bone in his arm is ok at the wrist but its grown wierd at the elbow so isnt in the elbow joint but just there unattached. Hes bard arm is slightly shorter, hes 11 now and just last week was told by the consultant that he wont be able to do a manual labour job he was gutted because he wants to be a marine. Im not sure if what my son has is similar to what your daughters got hes only got it in his arm and they wont operate for fear of making things worse as hes in no pain we dont mind that.