Hi Rob,
I read what you wrote and had to join to let you know that yes, I have had craniotomy/optic nerve decompression back in 2000. I have FD all throught my sinus, jaw, skull, etc. They shaved alot of the bone, moved my eye socket, opened up my sinuses and made room for the optic nerve. The cut me from ear to ear (didn't lose any hair) the incision was as thin as a comb part...and then did a circular incision basically removing the top of my skull and shaved down the growth on it. They also sectioned out a piece of skull over my eye to reach the optic nerve... Big Surgery but I just knew I'd be fine and was thrilled that I finally had found some doctors willing to work on me. I have (but already did prior to the surgery) very poor vision in my left eye and after the surgery they couldn't get it lined up quite right and I awoke a/ double vision, but no pain, nothing's grown back and to most people, I still look pretty much normal except for the eye being a little messed up. I've learned to block out the double vision and it rarely bothers me now. I was scared I would lose my vision completely if they didn't do it and also, my left side was becoming slightly deformed from the fd and they fixed alot of it during the surgery. If you have more questions, I'll be happy to share what I know. Marie

Thanks for your response,

I'm glad the surgery you had was successful.

At the moment my growth hasn't affected my eyesight so having major surgery probably isn't my best option.
I was interested in having the bone shaved down for cosmetic reasons but I've heard that this might not be a good idea. Plus I don't know how it would look.

Anyway, thanks for your help, it's much appreciated :-)

Rob,

I pretty much have the same thing (FD around my left eye/head but never caused a problem/nothing hurting my vision or nerves. Most people do not notice it unless I tell them or my head is turned on the FD side and I'll get the "did you bump your head"). I lost my hair, so it's more noticeable now. My doctor recommended shaving as well and said he could get my forehead to be almost symmetrical, or basically unnoticeable. On a scale from 1-10, he said I was a 2, so I'm very hesitant to go forward because I'm basically trading a small bump for a major scar. He said he would cut ear to ear too. Let me know if you went forward with your surgery and how it went.

Hi,
I actually had the surgery done on thursday and am now out of hospital and recovering well.

Sounds like the situation that you're in is very similar to mine. The surgery went very well and was not as major as I had anticipated really. Cosmetically, I'm very pleased with the outcome. I currently have staples and a few stitches where the incision was made, but gauze is covering the scar so I can't really judge what that looks like yet but I'm not too worried.

The operation itself was fairly straight forward (from my point of veiw!). After the actual op, I only stayed one night and then they sent me packing with a load of painkillers etc.

If I can be of any help with advice, pictures etc. let me know because I had a hard time searching the internet looking for people who'd had the same thing done. Obviously can't take photo of the scar until gauze is removed!

Hope that's of some help,

Rob :)

Very glad to hear things are going well. I'd like to see a before/after picture when your back on your feet or even "before" pictures. Send to robroger87@gmail.com. Best wishes in your recovery.

Rob

rneary1,

I see this works a lot like Facebook with regards to photos of FD. I've added a photo of myself if you accept me as a friend.

Hello again,

For some reason my computer wouldn't let me upload the pic to my profile so I'll just send it to you via email. If this is of interest to anybody else reading let me know and I'd be more than happy to share pictures of the surgery before/after.

Rob, could you please tell me if the surgeon you used was experienced in treating/operating on FD? and if so, could I have his or her name. I am having a difficult time finding doctors who are well-versed in treating FD.
thank you and I hope 'things' are looking up for you!

hey guys,

i'm 31 years old and have FD all over my right sinuses/orbital cavity and in the last 3 months i have been getting daily headaches. do any of you get these headaches? have any of you had headaches relieved from surgery?

regards,

ben

Hi Marie, I just joined the site. my daughter had a similar surgery as yours. Can I ask you how old you were? She is almost 19, and is still getting headahes. wondering if one can ever feel completely the same after a big surgery.

Hi Joyciel I had surgery in 1998 when I was 15 and have never had any headaches since then. I am now 28 now and havent had any problems but I am starting to notice sharp / dull pains in my left eye socket randomly. I hear that FD slows or stops when you are an adult im hoping thats true. I have had 2 major surgeries in my life and i really hoping I would never need to go through it again. Has anyone else had multiple surgireis?

Sean

I had this surgery done and was opened up ear to ear at the Craniofacial Center in Dallas Tx by Dr. Jeffery Fearon. He is awesome and my face looks normal now, no more headaches. I did have double vision for a while as well and had trouble going back to school..there have been some emotional long term reprocussions but I am so glad I went through the surgeries to have to bad bone removed because I do enjoy my life now. I hope you have the strength to get yours treated as well...it stinks at first but after a few years you can live your life and not worry about the diseased bone because there will be less of it and it won't really grow! You can survive this and have a normal, happy life! I promise!

misscharlie... did you have actual skull/fibrous dysplasia removed or just shaved/contoured? Why did you suffer from double vision? I'm still contemplating this surgery, but mine would only be shaving and contouring. As mentioned in a previous post, I've lost my hair and worry about the scar.

hi Rob i have had 11 operations to shave down my cheek bone with fd it is a short time solution to getting rid of horrific pain and to keep the look cosmetically i live in Aberdeen Scotland and i have a terrific doctor but we don't have many answers as its not that common in scotland but it does help my pain a really lot and im glad for it as some times i have to bed my self with the pain its hard as there isn't people to talk to that has the same ,go for the surgery if you can as i does make a difference short term hgchivas100

hi joyce my fd was diagnosed on my 50 birthday didn't know i had it before then i received a biopsy thats when it showed up on me and its been active since and its now 5 years on i do hope your fd has slowed down hgchivas100