Hello all,

Well, I did end up getting a second opinion about the fibrous dysplasia in my forehead. This doc seemed a little more concerned about the fibrous dysplasia than the other doc did. According to my new doctor. My right frontal sinus is totally filled with the FD and the left one is nearly filled up. He also said that it have the FD in my ethmodial (spelling) sinuses. I found this interesting because the other doc didn't say anything about the ethmodial sinuses. So anyways, the doctor is concerned about my ethmodial sinuses becoming filled up and blocking off what is left of my frontal sinuses which I guess can be a big problem. If the FD does grow more and that happens, I'm looking at major reconstructive surgery where they will take out the bone in all of my forehead, frontal sinuses, ethmodial sinuses, down to the bridge of my nose, and some of the bone under my brain...and then have to reconstruct it all. HOW SCARY!!!

So anyways, I had another ct scan done Friday, and I have a follow up with the doctor on the 23rd.

I'm so nervous to find out what happens! I think other than the pain/pressure in my forehead, it makes me nervous that I have my second sinus infection of the year, and it's only the middle of March!!! Eeek!

Well, I'll keep you all updated as to what happens. Keeping my fingers crossed that everything turns out ok.

HI Froggy!
I was wondering how you were doing. I see things have not been to good for you.
For what it is worth, the area of FD I had removed and grafted has not come back and that was 18 years ago.
That will probably be the case for you, and then maybe you will never have another sinus infection.
It is good that you got the second opinion.
Have they tested you for hormonal imbalances yet?
Please let me know how your appt. goes on th 23rd.
Hang in there!!
Anne

Froggy,
I am so sorry to read your update, I was so hoping it wasn't the FD.
But thought with the headaches you were having that it just might be - so GLAD to see you got a second opinion.
I KNOW things are very scary for you right now.
Once I was diagnosed, I made a friend who has FD in her skull along with other bones, but the skull was the hardest for her - the headaches. She has been through several surgeries.
Know that I am here for you and will continue to pray for you!!!
Please post back and let me know how things are going for you since the 23rd!
Melinda (hrtofluv)

Hi,
I am Natalie a 29 y/o mom. I have just been diagnosed with Fibrous Dysplasia. I have been told that this is very rare for my case. It was found in the left portion of my skull. I have just been reffered to a neuro surgeon. I really have no idea what to expect here. I have been having extreme back pain close to my scarum and numbness, burning, pins & needles, with numbness that wraps around my hips. The pain stabbing pain and stiffness is in my back lower. I am wondering if some how this diagnosis may have something to do with my back pain. If I had not had a bone scan for my back Also a full body one) I would never have know I had this. It was confirmed by CT & MRI. I do get headaches and pressure feeling behind my left eye, but never anything that would make me think I needed to see a doctor. Well, I am new to all this and would greatly appreciate as much FYI as I can get.

I also have a disease called PCOS Poly cyctic ovarian syndrome. It is an insulin restiant disease with some hormone problems. One of which is I have to much testosterone. Hmm wonder if this is all related. So many questions.

Froggy ...Hun your a still a baby, I am sorry you have to be going through this. My prayers are with you hun!
Natalie

Bumping up for Clair.