What is Fibrous Dysplasia
Fibrous dysplasia is a disease that causes growths or lesions in one or more bones of the human body. These lesions are tumor-like growths that consist of replacement of the medull...
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Does the surgery work? Aredia?
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I was diagnosed with fibrous dysplasia in my skull about three years ago and had to have surgery in November, 2008. I have been fortunate to have a physician that is fairly familiar with the disease, and he has now placed me on an IV drug therapy of pamidronate (Aredia). I have the two hour IV treatments for three days every six months. Has anyone else used Aredia to manage fibrous dysplasia and if so, has it helped at all? Also, has anyone else had fibrous dysplasia of the skull return. I feel okay right now, but I'm worried that I will require another surgery in the future and I desperately want to stop the IV treatments. It's only every six months, but I absolutely hate them. I also have problems with my calcium and Vitamin D levels, and must take medicine and vitamins to control it. I would really like to go back to a "normal" life...
Posted on 07/07/09, 09:07 am |
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Alrthough I have not been Aredia, I'm wondering what you need it for. Is it to slow the growth of the FD? I find it extremely unnecessary, as I've never heard of it used for this, but of course, I'm not exactly aware of why it's being used on you.
I actually do have it in my skull. I had a major surgery to remove it, and two other ones to fix my droopy eye. I'm having one last surgery so they can remove a metal plate, and hopefully fix my eye once and for all. It can return, more easily as a child. Mine has grown, just not significantly enough for surgery. Good luck! I'll also leave you a message if you need someone to talk to! c: 
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Thanks, Chopsuey, for responding. The Aredia is supposed to slow down (maybe even, in rare cases) stop the growth. I've only had one surgery and they removed most of the fibrous dysplasia. But they are very clear that it can return. At 37, I'm far from being a child, so maybe mine won't return. The problem is, I am starting to get headaches. I wasn't having headaches before I even had the surgery. They only did the surgery because it was getting so big, but surprisingly, it wasn't causing me any pain. My fibrous dysplasia was starting to invade my carotid and auditory canals, and that's the part that makes me nervous.
Thanks again for commenting, and I wish you luck as well.
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I am on aredia every four months for two weeks I have the many tumors through out my spine and ribs 9 all together. I've been on it since last year so far nothing changed but i get sick as hell every time i have it do you? i was wondering if you have problems with joints
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I was just diagnosed with Fibrous Dysplasia by CT Scan. The bone mass has impinged on my sinus cavity and the skull as well. Not really painful, except tender to the touch. I'm 54 years old.
The surgery is quite technical and (aka: nasty) and requires an EN&T surgeon and neurosurgeon as well (to rebuild the skull). My question is how to you find a surgeon or hospital that is experienced in the procedure? I don't care where I have to travel, I certainly would want an "expert" in the field. Any suggestions welcome!
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