Fibrous Dysplasia Support Group

I was just diagnosed with FD in the back of my skull. Have never talked to anyone else with the same disease. I am having lots of headaches... but my doc doesn't think the FD has anything to do with it. I am having a hard time believe that and going for a 2nd opinion. I would be open to communicating about FD.

Has your head got any bigger i mean like the bone? And what happened in your first operation? I have it on my jaw and it bulges out on one side. I'm going back to the hospital on thursday morning after having some more scans last week to see if it has infected any other bones in my body.

I have not had surgery. The doc i saw doesn't want to see me back for 6 months, which i am not so sure about. I am trying to get into Johns Hopkins for a 2nd opinion. Yes my skull has gotten bigger, it has pushed my skull out. I have a good size bump on the back of my head... but my hair covers it up. Surgery kind of scares me but to me i think it might give my head relief from the headaches.

I think mine has spread into my chin. whether that's just me being parinoid but it has started to get bigger there aswell. I shall find out on Thursday what I'll have to have done but I know that I will have to have a byopsy of the bone so I'll have to be put to sleep for that then I can have it 'shaved' down when it stops growing because it will be more effective. I am quite scared about surgery cause I've never had it done before so I am abit nervous. How old are you and where abouts do you live? England?

Hi Gheebs,

I would be really interested to know more about how it is affecting you. My daughter is 10 and she has it in her jaw. It hurts her really bad for a few days and then she doesn't mention it for a few weeks. It is the same for you? Have you found anything that helps with the pain?

Hi VicT,
That's what happened to me but it has clamed down a lot recently. Mine started off in my right jaw and then it started hurting my left side of my chin. My jaw has got a lot bigger and my chin has abit has your daughters got any bigger? Also I just had painkillers it hasn't been hurting that much recently but the pain was really intense around the summer and autumn. When it first started hurting I told my Mum that it was but she wasn't sure about it, it was only when the bone got bigger when she took me to the doctors where I got refferd a lot then finally about 3/4 months later they found out what it was. I want to have the bone shaved down when it has stopped growing as I'm 14, 15 in May and I really don't like having a lop sided face.
Let me know how your daughter gets on and thank you for the reply :]

Hi I am new here. I have read some of the posts and I am surprised to see that it seems like 2 people in this group have FD of the mandible(lower jaw)? We found out back in Feb that is what my 5 yr old daughter has. I was told she is too young to do anything about it and to come in for yearly CT scans. I have done plenty of my own researching and found that most of the Dr's studying the disease advise not to get the bone shaved off or get bone grafting later on. Most people that have had that done complain of more pain and it grows right back. I know no one wants to have a lopsided face and I dont want that for my daughter either. But if it would just end up causing her more pain and more problems, I would rather leave it alone. Have any of you guys joined the FDSOL group? I learned a lot in there from reading stories from people who had it in their face and almost all of them said it came back worse and was more painful. There is also a Dr Collins that seems to answer questions in there. He is very knowledgable about Fibrous Dysplasia. So before you go through with any kind of surgery, I would talk to some people in that group and see what they say. I hope everyone is doing great, glad I can be part of this group. =)

I guess I haven't been on here in a while. I had surgery Feb 29th at Johns Hopkins Hospital to remove my FD. My surgeon removed a 3inch circle of my skull and replaced it with titanium mesh. I have also heard that not to have it scraped as it will return and be just as painful if not more. With mine i went to a doctor that has dealt with FD before, and was going to remove the entire infected bone. I am doing well now 2.5 months post op. I am back to teaching my wonderful 2nd graders and out walking daily with my puppy. I do not regret the surgery at all, I am happy to be free of the constant pain I was suffering from. I still suffer from migraines but have been told it is completely unrelated. The doctors are still a little concerned and are trying to figure out why I am getting so many.
About leaving it alone, that was what I was doing, and going to have it checked again in 6 months but it was growing quite fast and surgery was my only option unless I wanted to continue with the chronic pain, and the chance of the impingement of the MAIN vain that bring the blood from the brain back to the heart. That kinda scared me and made me decide for immediate surgery. I have tried many times to join the FD group but have NEVER gotten a response to get into the members only stuff. :( I hope your daughter is doing well and not suffering much. I know the surgeon I went to at Johns Hopkins had just done a reconstructive surgery on a young women with FD. Good luck with everything and would be glad to answer any question you have for me or about FD.

Alli

Thank you everyone who has replied !
And also I think I am going to have the surgery this summer when I get back off holiday.
How long did it take for you to recover from the operation? I have it in my chin and apparently they do it from inside your mouth.
If anyone has any questions then just ask as I would like to know more about the condition.
Keep me posted everyone :) x

Hi to all, and my heart is with all the people that are suffering with this rare dessease. I have it now on on my left leg ( tibia ) Is been with me all my life and I didn't know about it until 2 weeks ago. My pain now is not on my leg, is in my knee now, is very strange it looks like it has moved to my knee now, sometimes affects the nervs on my left leg that goes from the knee to my hips. Is good to know that I am not alone with this problem. My heart is with all the ones that are suffering with bigger pains than mine. We all should be fighters, I have had read about the reason on why do people get this bone problem. So many theories no exact cause. I am a very strong believer of natural medication. I will start in trying something to get my immune system working good in all my body.
You will probably are asking your self: Why the immune system ???
In real life any deseases in your body come from your IMM.SYS. If the chemicals in the part of your problem was not working properly when your bones were getting form.
Now I have to give my body (The immune system) the medication that it needs to fix to correct the problems that my body have when this one was growing in my mami's stomack. I don't know how long my body will take to see any results on my FD. problem. One thing I know, this medication works on your immune system.
I will keep you inform about it. I will also go to see an specialist
for my FD. I just hope that this doctor knows about this rear deseases. see you soon in here.
Don't give-up !!!!!!!!!!