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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hi, iam recently diagnosed with f/d of the skull and have a golf ball size lesion pressing agianst my brain. i find it scary that their is little info on the disease and i have had to start driving 2 hours away to find doctors that have atleast heard of it... my bone scan showed "hot spots" on my shoulders, spine, breast bone, ribs, skull, hand and pelvic bones but the plastic surgeon i saw that should me the image wouldnt get into the results since it isnt his area...i need to call my bone doc.
i hurt, im exhausted all the time, my temper is worse than i can ever remember.. does anyone else have any issues like this? has any one had surgery? what about drug treatments? any communication with people that can relate to fibrous at all would be great, some days im ok with it other days i just want to hide and cry all day, im 34 , a wife and a mom of 2 wonderful boys that are 10 and 5.... i put on my strong face for my family and husband but im going nuts in my mind!!! the biggest peace of mind i have is that i could not have passed it on to my boys. and i could use the friendship of others that understand all this.... god less you all and thanks. opal Posted on 03/25/09, 10:03 am |
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First of all, I'm sorry this is happening to you.
I have had surgery three times, because it was going to press on my optic nerve and make me blind. They took out about 70% of it. You shouldn't worry about your sons getting it. It's rare. Best of luck to you and your family! -KK 
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I just had a 3 cm mass removed from my skull and let me tell you I dream again I am less bitchy and snappy. I feel better and now I am worried because I now found another one near my brain stem I just hope this one doesn't grow large as the last one other wise it will be a much higher risk surgery to remove it as my last one finally was getting into the center of the brain which is not good. The hot spots are a sign there is activity on the bone because I had a BIG old black one where my one mass was. They could be a sign of more fiboros from what I under stand or just weak spots if I read correctly when reading about hot spots on CT's. I had 1 mri, 1 ct, 1 ct with contrast, 1 mri with contrast, 1 bone scan with contrast and many other tests pre surgery. My dr is with a San Diego DR in Kaiser Premente and they have never seen or really heard of this condition either. My dr said he once in college saw it in a textbook.
http://www.webmd.com/a-to-z-guides... http://www.nlm.nih.gov/medlineplus... http://yourtotalhealth.ivillage.co... All are different sites with info on bone scans and hot spots, shift threw using the ctrl button at same time hit f key and it will bring up the find box type hot spot and you will find info on what they mean. As for the condition you and have both recently found you we have I have no info as of yet on it. Good luck and I am sorry for you pain and health issues and tiredness. I am barely 24 with two 4 yr old girls both with special needs so I understand. I hide it from everyone have since before I even knew what what even barely going on when something showed up on an mri. I have my break downs of crying but no one knows of them or sees them 90 % of the time. It's hard to be unsure of something because it increases fear and worry. Remember worry leads to stress, stress makes you weak and tired and can kill you. So take care of your self please. For your boys sake, remember not to stress/ worry so much. HUGS I am here if you ever wanna talk. Also yes it's rare but not genetic they are unsure whom and how one does get it but they know it happens in uterus.
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