FAO Squad

[Alliegid]

Sorry to bother you , but wondered if you could shed a little light for me.

Middle son (15) has monocotic fibrous dysplasia in his left clavicle, it hasn't changed much for the last 4 years, but has recently spread a little - from 2/3 to 4/5 of bone, - this lump on his collar bone and severe pain when it flares up are really the only symptoms - no birthmarks etc.

When we see his consultant I never feel that I can ask what the prognosis is, as my wonderful son is with me, - and research on the net is too scary. Wondered whether you could tell me anything

Thanks in advance

[Sqad]

Alliegid.

Sorry, I have just seen your post.

Have you asked me about this before?........I recollect some postings......probably not you.

Monocystic fibrous dysplasia is NOT cancerous.

The cause is unknown, but thought to be genetic............pretty rare condition.

Your son has it in his clavicle and as you say it is getting larger over the past four yours. it may continue to get larger, or it may suddenly stop growing.

It will never go away but it will never kill your son.

If in the future he develops pain, then surgery is indicated.

Surgery is successful and involves excision of the affected area with bone grafting, usually from the iliac crest.

I am sorry that I cannot be more specific, but that is all I know about it.

Do not hesitate to get back to me for other queries that I have not addressed.

[Alliegid]

Thank you - just checking that the monocystic you refer to is the same as the monostotic (sorry typo earlier) they think he has.?

Thanks for the info - WON'T KILL HIM is the important one for me

If genetic could he pass this on, - have we given this to him?

Thanks again for comprehendable info :o)

[Sqad]

Allie...no evidence to suggest that you have given it to him and no evidence to suggest that he will pass it on.

Good luck.

[Alliegid]

:o)