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...
Hi Guys,
I've had FD in around my eye and head for years now and have recently finished the process of having it biopsied, scanned etc.
The growths affect several of the bones in my skull and orbit so having them completely removed is an option that the doc's don't recommend. Because of the deformity they have caused though, there is the option of having them shaved down.
Has anybody had this surgery? Was it successful? I understand that the the incision would be from ear to ear pretty much. Be interested if anyone had this scar/operastion done...
Thanks,
Rob
I've had FD in around my eye and head for years now and have recently finished the process of having it biopsied, scanned etc.
The growths affect several of the bones in my skull and orbit so having them completely removed is an option that the doc's don't recommend. Because of the deformity they have caused though, there is the option of having them shaved down.
Has anybody had this surgery? Was it successful? I understand that the the incision would be from ear to ear pretty much. Be interested if anyone had this scar/operastion done...
Thanks,
Rob
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My 6mo twin DD's are EBF and just started rice cereal on the first. Everything has been going fine except this morning one of them had a diaper rash (lots of redness around her anus). I read this as one of the signs of an allergy. BUT I did just buy a different brand diaper yesterday (which they have used randomly before w/no issues). Do you think its the cereal or the diaper? Im ready to start...
hgchivas100
Monica
Message me for more details. I will answer any questions.
1. 2 years old: cut from ear to ear, bone shaved down.
2. 10 years old: bone grew back. Cut from ear to ear, bone shaved down.
3. 18 years old: surgeon said I was done growing so if he shaved the bone down it shouldn't grow back. He said they could actually take the bone out and put in titanium mesh. I opted to remove the bone and put in titanium mesh.
4. 28 years old: surgeon said they had better material they could replace he titanium mesh with. They replaced it with the hardest plastic out there. Special mold was made over seas. They put an implant under my right eye to make my eyes more symmetrical. There was a possibility of having double vision but I took the risk. I had double vision for one day. My eye was swollen shut for a week after surgery. My right eye is still a little asymmetrical so I will probably have them put one more implant under my eye to raise it more. They will also give me fat injections on my forehead so the corners of he implant camaflouge better. During this surgery I did get a CFS leak in my skull. I had swelling for a year after (on and off).
5. I had a CFS leak due to the previous surgery. They put in a lumbar spinal frakin for one year so the CFS leak wouldn't have pressure on if and would be able to heal and close. I get the drain taken out in 2 weeks! Yay! Pray that the CFS leak is healed and closed up.
Please message me with any questions or for pics.
Oh side note: I did go to a Generic Specialist because we are going to try to have a baby in a couple months. The Genetic Specialist said FD isn't hereditary BUT there have been cases of women with FD having the condition flare up again during pregnany. It's supposed to be dormant when you are an adult but for some reason pregnant women sometimes see it come back while they are pregnant. I pray this doesn't happen to me.