Collar bone bump.

[Alliegid]

About 4 years ago my 15yr old had a strange lump come up really quickly on his clavicle - it is boney and like a half egg really. After much investigation, to ensure that it was cancerous, he was given a probable diagnosis of chronic osteomyelitis, they have recently changed this to fibro dysplasia. We go back to the hospital a couple of times a year, but really all they do is monitor him. He has had numerous blood tests, CAT & MRI scans, but no treatment. He is in a lot of pain at the moment, though his bump remains the same size and he has had no more come up. He is on co-codamol 30/500 and I worry about how many he takes to get through the day (never more than 8). I\'m really wondering whether this is something that he will outgrow, what he can do about pain relief etc. His consultant is lovely, but he just doesn\'t seem to know.
Sorry - just feeling a bit fed up today.

[Sqad]

Allie.........I am not sure that I am going to be much help here, but a few points, hopefully to make you feel better.

I assume that he has had a bone biopsy and that it has been sent to a Bone Pathologist for scrutiny.
Also MRI scans.

Chronic Osteomyelitis, common 50yrs ago.....now extremely uncommon.

Not an Osteogenic Sarcoma which would have been very bad news as would an Ewing's tumour...a plus point.

Fibro dysplasia..not malignant, but not curable. He has very little option but to continue with his pain killing tablets.Treatment is experimental and not well established.

Perhaps a second opinion from an Orthopaedic surgeon specialising in bone tumours, might be reassuring to the family.

Sorry that I cannot be more positive.

[Alliegid]

Thanks for that Squad - In the early days he was sent to a hospital in Birmingham (we are in Manchester) for a biopsy and various tests to count out cancer. After that our local hospital basically washed out that bit of his collar bone with antibiotic and he was an antibiotic drip for a week or so, and tablets for a couple of months.

The results of his scans get sent up to someone at the uni, but they just say that they haven't seen anything like it before. I was diagnosed with osteomyelitis at 7, about 35yrs ago and eventually outgrew it , t sort of lessened over the years and the outbreaks got less and less (you'd never know now) Son's ESR rates are always normal, but mine used to be very raised, so that didn't really support the diagnosis)

He has his GCSEs looming this year and can't afford to spend the year in a daze - any ideas on alternative pain relief?

Thanks for response - feeling down because daughter has just gone to uni, and elder son still very thin (he did eat some of his birthday cake yesterday though :o) and I want my youngest to be well. Hubby away all week too which isn't helping.

[Sqad]

You live in Manchester.....then you have Wrightington Orthopaedic Hospital quite close.....Parbold Nr. Wigan...well respected Unit.

Sorry that I cannot be more specific.