Couldn't find what you looking for?

TRY OUR SEARCH!

Dr's in our region seem to have no idea how to proceed. We have a very healthy 16 yr old boy with the exception of, he has chronic bone difficulties with the left distal femoral diaphysis with posterior periosteal reaction. No fracture evidence seen. No discrete mass seen outside the bone other than the periosteal reacation. Sclerosis visible. Very dark marrow on the T1-weighted sequences. Chest CT scan, Full body scan, MRI X 2, Bone Biopsy taken with inconclusive findings, followed up by open biopsy with multiple bone smears negative results. Blood cultures negative, all standard blood tests within normal range. Pain always in left femur and has never strayed from that vicinity. Yet bone activity is evident.
Initially osteosarcoma was diagnosed and limb salvage was suggested. This proved to be wrong through second opinion. Second opinion was stress reaction. No weight bearing for 8 wks with no change. Flare-ups are 6 to 12 weeks long with only 12 to 25days in between before another flare-up occurs. The only means of pain control are NSAID's and hot baths seem to help. He is mainly afflicted with intensifying pain at night.

As said previously, always in the left femur and has not strayed form that region. Third diagnosed was Chronic Recurrent Multifocal Osteomyelits. Now, with no improvement in condition for a year, recent x-ray shows new bone growth/remodeling. Yet another cancer scare as everything was put back on the table. The new suggestion is to removing the 10mm portion of the femur and use a cadaver bone or just plate and screws until it heals leaving him with a prolong recovery and physical therapy. Can anyone help?



Yours desperately,

Loading...

I can't recommend a doctor but if you have not tried them already I would recommend that you contact Children's Hospital in Boston. We transport many children and young adults there and I've seen some amazing results happen.

Good luck in your quest. Please keep us posted as to your sons progress.
Reply

Loading...

I agree with Children's Hospital. The work that they do there is incredible and I used to actually live not far from there--they have very impressive facilities and a lot at their disposal. It's a great place to go if you can. Would Boston be within your travel range?
Reply

Loading...