Hi all, :wave:
I was hoping that someone on this board would be able to give me some information. I just found out that I have fibrous dysplasia. From what I currently know, it's in both of my frontal sinuses, one sinus is fully taken over and filled, the other isn't completely filled, theres still some air in there. It's also on the majority of my forehead and up into my skull a little. I went to an ENT yesterday who explained it all to me and my parents (I'm 16). However, he wasn't sure what to do about it since my insurance sent me to him instead of another doc in his office who specializes with the bones. He's getting an opinion from that doc this week. I was wondering if this "disease" or whtever it is could cause me any harm. Also, I have hyperplasia in my right knee. I'm diagnosed with patellofemoral syndrome, and i'm looking at surgery. I was wondering if hyperplasia and dysplasia are related, or if these are two totally different things. Also, Is there anything that I should keep an eye out for with this. Can anyone give their experiences with this? I'm just a little scared/worried about me right now, since I really don't quite understand whats going on. :confused:

Thanks,
Jessica

Hi...I made a mistake. When I said, "I was wondering if hyperplasia and dysplasia are related, or if these are two totally different things."

I meant to say hypoplasia not hyperplasia.

Well from my experience dysplasia is an abnormal development of connective tissue which in your case its your skull bones. It can begin before or after birth. Hypoplasia is underdevelopment of in your case something within the knee joint. Your doctor can tell what is wrong with an x-ray. It could be the knee bone (patella), end of your upper leg bone (distal femor epiphysis), the top part of your lower leg bone (proximal tibial head) or tissue within the joint (ligamental). If the ENT your talking about is an EENT (eyes, ears, nose, and throat) doctor, than you may want to consider seeing an orthopedic or chiropractic doctor who specialize in bones of the entire body. Good luck and let me know how it goes. Mitch :angel:

Hi
I too have found out in last month that I have fibrous dysplasia
in the area of the right side of my skull base. I am 42 years of
age. As far as symtoms I suffer from chronic neck pain and right
side TMJ disfunction. Fibrous Dysplasia seems to be a thicking
which turns bone into a fibrous matter. This thickening can also
effect the nerves that it closes in on and around. This very rare
disease effects everyone differently because of the vast locations
that it may be in the body. I have just found a FD support group
on the internet where people can meet and share their medical
background with one another. Go to www.fdsol.org to reach this
site. I have been told by my otolaryngogist that this disease usually stops growing when the body stops growing. He recommends getting a CT in 6 months just to make sure it is
still dormant. Knowledge is power so read all you can about this
disease so you can make the right choices for your self.

HI i was diagnosed with fibrous dysplasia when i was 7. I had several leg surgeries at 11. I am now 33 and the tumors have returned.Now the drs belive I have polycystic fibrous dysplasia since over the years i have developed other seriuos illnesses affecting my endocrin system such as thyroid problems and type 1 diabetes which requires an insulin pump.The national Institute of health had a lot of good info so did the paget foundation in ny,ny.Since you are only 16 The Shriners Hospital in Chicago Ill. might help. They did all my surgeries when i was a kid they specialize in bone diseases.Iwish you all the luck in the world.If there is any other way i can hep please contact me.Just be as informed as possible its your body,make sure you are getting the best care possible,you deserve it!

*That is actually my sister she is having some computer problems so she is using mine her name is Pam*

Hello All! I'm new to this site, not really sure what to do. So I'll just give ya'll an overview of what I know and have experienced with FD and MAS. I was diagnosed with FD when I was 2. My mother noticed that I had a severe limp with the left leg. She took me to many Drs. None could tell her what the problem was. She was tired of them telling her that it was something that I had seen an older child doing, so I decided to "mock" them. We went to Children's Hospital here in Ohio, and a Med Student named Fankhauser had heard of my symptoms only a few times and asked my mother if he could continue to study my disorder. I have been in his care ever since. Now 24 yrs later I have been diagnosed with MAS. How they found that was when I was 21 I had a really rough pregnancy,considered "High Risk". They started to do tests and found that I have a severe case of MAS/FD. I wasn't able to have my daughter natural in fear that my hips would shatter,they had to put me under. Just like a few others I had started puberty and menstrual cycles when I was 7. Not very thrilling I might say! But I've learned to deal with it. Still waiting to see what will happen next. Scared to death but waiting. I haven't found too many people with FD let alone MAS, so it's kinda hard for me to talk about it. If anyone would like to help or just talk then I'm here. I'm open for what anyone has to add.

Hello
I also have fibrous dysplasia, I am 39 years old and my Dr tells me I more than likely had it since I was a child or teen. At the moment it hasn't caused me any trouble, it's in the tempral bone (right hand side of my scull) I was having head ache's so my Dr sent me for a ct and thats how I found out.

I also am worried about what problems this is going to cause me, mine is affecting my hearing a little, Im due to have further testing done, but I suffer extream anxiety and find it hard to get the energy or drive to go.

Anyway Im glad I found this part of the health forums.

Take care :)