Discussions that mention provera

Bone Disorders board

I'm Jessica. I'm 17, and was diagnosed with fibrous dysplasia last year. The only place that I know of that is affected with the fd is my skull and frontal sinus cavities, where the right one is totally filled and the left on is half way filled. I have a 6 month checkup tomorrow to make sure that it hasn't grown. VERY nerve-wreaking for me..I'm nervous! :confused: Anyways...to answer a couple of your questions...

---I haven't been told that hormones cause this. All that I was told was that it's like an overdevelopment of fibrous tissue in your bones.
---My doc has referred to them as benign tumors. If you think about it...it makes sense. Especially in my case, where the fd has grown to fill up what is supposed to be a space filled with air.
---No one has put me on any meds. So i don't know about the osteoporosis drugs.
---I've heard about the radiation thing too, but I dont know any information about it.
---All that I have been told is that the strength of the bone isn't there since it's fibrous. My doc described it to me as "webbed" or "meshed" bone so it isn't totally solid like it would be if it were normal.
---I haven't necessarily been diagnosed with endocrine problems, however, I do believe that there is something funky with my hormones. I've been diagnosed with migraines, after a couple years of trying migraine drugs and stuff and a couple birth control pills, I went on Depo Provera, and like magic, the migraines are gone! My obgyn thought that I had too much estrogen in my system or something.
---And i have absolutely no idea about the blood tests.

I am fairly new to this whole fibrous dysplasia thing. All that I have had done is a couple mri or ct scans where it showed up, so I was referred to an ENT since it is on my skull and frontal sinus area.

Uhm, I was told that the fibrous dysplasia stops growing when you're older, but I was never told how much older. Any ideas? And I know that pain is a signal that it may be growing. But what kind of pain would it be? Like, I don't really have pain in my head often, more like a 24/7 clamped feeling in my forehead, random headaches, but nothing to complain about really after having migraines for 3 or 4 years. But when I sneeze, that area hurts really bad for like 15 minutes. I also have a really high pain tolerance. Have you ever by any chance noticed anything with your joints, I'm not sure if this related at all to fibrous dysplasia or if it's just totally different, but my right knee, a part of the bone in there just didn't develop. Some place else too, I think my hip. The rest of my joints are really lax and subluxate a lot. Have you seen anything odd in your joints?

Just wondering!

Anyways, I hope I helped some with your questions. Good luck with everything. It's nice to finally talk to someone with fibrous dysplasia. I've made a couple posts in the past, but no one ever responded. I guess it is pretty rare, huh?