Fibrous Dysplasia Support Group

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 medullary bone with fibrous tissue, causing the expansion and weakening of the areas of bone involved. Especially when involving the skull or facial bones, the lesions can cause externally visible deformities.

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Does the surgery work? Aredia?

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...

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deleted_user
deleted_user

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:
deleted_user
deleted_user

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.
deleted_user
deleted_user

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
deleted_user
deleted_user

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!
deleted_user
deleted_user

tank0455

i found my surgery staff at UVA (university of virginia) and doctor Jane Sr. and his staff are familiar with the diesease and treating it, my fibrous is about the size of a golf ball in the right orbit of my eye pressing into the brain, i have some outter growth as weel and im set for surgery this coming friday. if you are ok with traveling i highly recommend them, they have been awsome to me.

best of luck
opal
deleted_user
deleted_user

I am curently taking aredia every four months for 5 hours at a time, My test results have shown that my tumors have shunk even though i grew another one.
deleted_user
deleted_user

My son is 12 years old, diagnosed with monostatic fibrous dysplasia in 2007. He has had several surgeries (with more to come),and gets infusions of aredia every 3 months for 3 consecutive days for 3 hours. I am not sure about the agent orange, as I don't know my father and am not sure if he was in the military, but I know that I was on the birth control shot when I became pregnant with my son, and after my husband left me while I was still pregnant, my dr had me start taking paxil for depression. I am looking to find out why my son has this, as I have 2 other children and they have no health issues. All 3 of my children have the same father (my ex husband), so I am curious if anyone has had something of the same issue? if someone has, please contact me. I do not want to have anything like this happen to any other person, if it can be stopped. Also, maybe if everyone with FD can somehow connect, and find some common threads as to possible causes, maybe this will help with finding a cure. So please please please help me on this mission. My son has had 4 surgeries, and I am so worried about the infusions that he has to have, as they are more experimental than anything else, and to be quite honest, I don't feel that they are working. As a matter of fact, with all of the warnings that are coming out about them, we are going to talk to our dr about my son not getting them anymore. The only other thing that has been different with my son, is he has been diagnosed with ADHD, and against my wishes, has had to be medicated for this since kindergarten...6 yrs ago. Thank you, Karolyn
deleted_user
deleted_user

Hi. As I understand things FD is cannot be passed on via the family tree. FD has been explained to me by a Prof of oncology as being a gene mutation. FD has been around for a very long time and was first identified and studied properly long before agent orange. I have monostoic FD of the femur and associated endocrine issues. Some F patients have high levels of PTH and low levels of VitD3. These can affect behaviour. Perhaps you could ask the Dr's to test these levles in your son thus eliminating them as a possible cause of behavoral issues. I hope this helps. Kind regards, Peter M.
deleted_user
deleted_user

I have an 8 year old daughter who was diagnosed with FD at age 3 years after a pathologic fracture of the distal right femur (near the knee). She had surgery/bone graft initially and again about 4 months after the fracture and has been doing pretty well since then - she was discharged from the care of her orthopedic oncologist. I have noticed, though, that her right knee looks larger to me than the left, her right foot seems to be toeing-in, which it hadn't before, and if she falls on that knee, it is tender for some time afterwards. Are these things to be expected?

Karolyn, my daughter also has ADD and we are about to complete Cogmed, working memory training. Like you, I am hesitant about the stimulant medications. Have you subscribed to ADDitude magazine? They have some suggestions about alternative therapies for ADHD ~ things like fish oil ~ here's a link: http://add-assets.com/asset/1383.pdf

Good luck, brighteye, with the health decision-making. I wish I had some advice to offer.