24th January 2005
Hi! First - what tests have they done so far to give you this diagnosis? I know you said you've had a biopsy, but what about a bone scan or an mri?
I am the one who did go through the clinical trial at NIH (wonderful place). But my diagnosis was changed after my visit there.
Prior to this, I had the rod and screws placed in my left femur and hip when I was 25 years old with the diagnosis of polyostoitic fibrous dysplasia, but he said I had to get stabilization of my hip.
My hip was stabilized without bone graft - he has healed rather nicely - I still have some bad bone left. I also have had donor bone graft to my elbow - but it didn't take at all. I have also done 4 rounds of IV 90mg aredia (pamedronate) - but they also showed no signs of improvement - just lots of pain after each infusion. I no longer take any medications except for pain on bad days (not that often). I've kinda just learned to deal with it, but I've also had 11 years to get used to it. I remember back to those active mid-twenties where I played vball and such. So I know that living with it is not an option for you as well as how frustrating this can be for you!
Remember that your doctor is not the only one who has dealt with this, so there are other doctors for second opinions as well as making sure that your doctor has done the surgery on a FD patient before you. NEVER be a first case (especially surgery) if you can help it. And make sure that the pathologist has diagnosed other people with this disease as well - not just taking the doctors word that this is what it is (I have seen this happen before when the doctor has looked stuff up, found the disease FD, and then told the path what he thought he was dealing with prior to his own biopsy was performed). And that fibrous matter in the biopsy does NOT make it FD automatically.
I think that if you truly have FD, that surgery will work for you without the need for further bisphosphate therapy needed. Also - if using metal, no donor bone is required (just makes for another site that will hurt you). If no metal is being considered, then the donor bone will probably be used.
And please don't take offense to the phrase "if you truly have FD". Remember this is coming from someone who was diagnosed with FD at 25, went through all the tests, therapies, and surgery to then be at NIH at age 31 and get a totally different diagnosis.
Please let me know if you have any questions about surgery time/recovery or about the clinical trial at NIH.
Wishing you ALL my best!
hrtofluv
I am the one who did go through the clinical trial at NIH (wonderful place). But my diagnosis was changed after my visit there.
Prior to this, I had the rod and screws placed in my left femur and hip when I was 25 years old with the diagnosis of polyostoitic fibrous dysplasia, but he said I had to get stabilization of my hip.
My hip was stabilized without bone graft - he has healed rather nicely - I still have some bad bone left. I also have had donor bone graft to my elbow - but it didn't take at all. I have also done 4 rounds of IV 90mg aredia (pamedronate) - but they also showed no signs of improvement - just lots of pain after each infusion. I no longer take any medications except for pain on bad days (not that often). I've kinda just learned to deal with it, but I've also had 11 years to get used to it. I remember back to those active mid-twenties where I played vball and such. So I know that living with it is not an option for you as well as how frustrating this can be for you!
Remember that your doctor is not the only one who has dealt with this, so there are other doctors for second opinions as well as making sure that your doctor has done the surgery on a FD patient before you. NEVER be a first case (especially surgery) if you can help it. And make sure that the pathologist has diagnosed other people with this disease as well - not just taking the doctors word that this is what it is (I have seen this happen before when the doctor has looked stuff up, found the disease FD, and then told the path what he thought he was dealing with prior to his own biopsy was performed). And that fibrous matter in the biopsy does NOT make it FD automatically.
I think that if you truly have FD, that surgery will work for you without the need for further bisphosphate therapy needed. Also - if using metal, no donor bone is required (just makes for another site that will hurt you). If no metal is being considered, then the donor bone will probably be used.
And please don't take offense to the phrase "if you truly have FD". Remember this is coming from someone who was diagnosed with FD at 25, went through all the tests, therapies, and surgery to then be at NIH at age 31 and get a totally different diagnosis.
Please let me know if you have any questions about surgery time/recovery or about the clinical trial at NIH.
Wishing you ALL my best!
hrtofluv