I don't know much about FD in the skull. I just didn't want you to go unanswered. I have it in 2 areas in my arm.
Please make sure they check her hormones.
Sorry I couldn't be of more assistance.
Hopefully hrtofluv will be by, she has lots of knowledge.
Let me know if you have any other questions I might be able to answer.
I have FD of the skull. It's in the frontal sinuses and the ethmoid sinuses too. My doc doesn't want to do surgery to remove it unless it continues to grow and totally blocks off my sinuses leaving like air bubbles in them. He says that it is very extensive surgery requiring the entire area to be taken out, (which extends from my forehead back on the top of my skull), and hten replaced with a synthetic material. The only other way he would do surgery, is if the FD starts causing cosmetic deformities. This is different from what other docs have said, some have said I don't need surgery at all, and others were like oh yea, you need surgery. I suggest that if you aren't comfortable with it, then get a second opinion, especially since many doctors aren't familiar with FD. Uhmm, if you have questions, feel free to ask. I'll check on here periodically.
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Please make sure you are with the right doctors before allowing any surgery.
The best advice I can give is to check into the National Institutes of Health (NIH) in Maryland. They have done numerous clinical trials on FD with bone grafts and using medicine infusions (I have been through one). I would definately NOT put my child through this hard of a surgery without knowing the doctor's experience (and it better be HUGE) with FD.
Please post back and let me know that some doctor is not hurrying you into this decision for your dear daughter! FD is NOT life-threatening so rushing into surgery is not necessary. FD is typically slow-growing also another reason not to rush into such a HUGE surgery. FD can grow back if the surgeon does not have lots of experience with FD.
Post back soon and let us know how we can help you get your daughter the proper treatment for her disease.
The Following User Says Thank You to hrtofluv For This Useful Post:
Thank you for your advice. We are going to get a second opinion on Monday the 14th of Nov. at UCSF. the Dr. at stanford did say that we could wait until Summer. I was thinking it would be better to get it over with but now that I have done some research on it I am not sure I want to rush it. I may look into the Dr. in Maryland.
thank you so much and I will let you all know what happens on Monday.
The Doctor At Ucsf Was Dr. Perry He Was Very Informative And Says That She Does Need To Have The Surgery. He Said That The Location Of The Fd Is Not Encroching On The Brain And It Should Be A Very Simple Procedure Due To The Location And The Size. We Now Need To Dedice If We Want Him To Do It Or If We Should Go With Dr. Edwards At Stanford. Dr. Edwards Has More Years Of Experience And Was Highly Recomended By Our Pediatrician. However Dr. Perry Of Ucsf Has A Great Educational Record From Yale And Residency At Johns Hopkins Medical. Any Opinions Would Be Helful. Just Not Sure Who To Go With. I Realy Liked Both Of Them And Got A Good Feeling From Both. It Is Very Hard To Decide.
Since both men sound very knowledgeable - I would go with the less invasive procedure or the one that you feel the most comfortable with (gut feeling). FD is not a "given" or clear-cut disease - meaning you don't know if it's going to grow slow (which it typically does) or go through a growth spurt. The doctors only know what has been published about the disease unless they have first hand experience. And there is still not that much known about the disease. NIH is working on changing that through research.
To explain - I will enlighten you with my story. The first ortho I went to locally knew enough to sound knowledgeable - told me to wait 6 months and re-xray to see if it had grown. I wasn't comfortable with that and spoke with a friend who worked in another ortho's office. Saw him (a different ortho that I had to fight insurance to cover) and he told me the real story of FD (or so I thought) and that surgery was necessary, but not an emergency - I could think about it. So, then I started researching the disease more and found an ortho surgeon in the next city that had published something on the disease - cause he had 2 cases (one with FD of the skull). I went to him and he had me in surgery the next week for a rod down my femur since "it would shatter completely with one false step". So, I had the surgery (long recovery) and thought my misery was over. The bone path report came back as similar to fibrous dysplasia. So, I asked the surg and he said he had sent it down as "suspicious of FD". So, the pathologist had never seen FD before and made his diagnosis on what he was told it could be - FD (didn't give me the warm fuzzies). I had an opportunity to meet his other on-going patient - she had been through several surgeries and had lost alot of mobility in her neck. We become fast friends because noone else had this disease anywhere locally since it was so rare (I have now learned differently - although rare - there are alot of FD patients out there and websites that cover all the info you need to know).
Well, 6 months down the road, I started limping again. This ortho (whom I worshipped at first) said well based on your xrays - the good bone has grown back - let's take that rod out - you don't need the stability anymore. Since I still had alot of pain, I continued to do research online because I wasn't set that this doc knew as much as he claimed - he just had another patient that was miserable. Found out they were doing a clinical trial at the NIH. I was accepted into the trial mainly because I didn't meet the typical symptoms. Well, after going through the entire trial including a bone biopsy (something that I think is necessary to make a clear-cut diagnosis), I was shocked to learn that the disease I thought I had for 5 years was actually NOT what I had. I had an even rarer disease that as of yet - no one in the US has been diagnosed with - sent the path to Italy for diagnosis. I have angiomatosis of the bones (somewhere on one of these posts is my story of the details of the trial at NIH). But I learned that the worst thing in the world for me was taking the rod back out - no matter what. I actually worse off now then when I had the initial surgery for stabilization.
So, this is the only advice I can offer - if you or your daughter can handle it - I would look into a clinical trial. NIH is the most wonderful facility - everything is provided for you and your daughter won't be faced with surgery until a true diagnosis is made.
The local friend I have here ended up signing up for the trial as well cause every surgery here to minimize the invasive and disfiguring growth on her skull seemed to only make matters better for a short period of time. She is under-going a new treatment of infusions that is helping more than the multiple surgeries ever did.
I hope I haven't confused the matter more for you by telling you my story, but as a parent myself - I know I would want to make the most informed decision I could regarding my child's medical treatment.
Wishing you all the best!
I am very frustrated. We went to UCSF for a second opinion and they said the same thing. I realy liked the Dr. there but decided to go with the DR. at Stanford with more experience. I have been trying to schedule the surgery for 8 days now and I have also been trying to get the DR. or nurse to call me to answer some questions. No one will call me back. I am so frustrated I wonder if I should go with the other DR. I feel like they are not responding to me. Any suggestions. HELP
I don't know anything about those 2 drs. You could call NIH and see which ones are on their lists??
As far as the doctor not calling you back although it is absolutley terrible, I find that they are all like that. So, I guess my point is that if you feel more confident with one particular dr don't let their wonderful manners deter you. You will probably get the same treatment from both.
I have had FD for over 15 years and every single dr will tell you something different. I really think they just don't know.
I wish I could help you more and I am sure that you will make the right decision.
Just an update. Olivia had her surgery at Stanford Childrens Hopsital on Dec. 28th. The Dr. said it went well and she is doing fine. We got home on Friday just 2 1/2 days after the surgery. The First night and next morning were ruff and a bit scary. But she realy bounced back. Her hair is already growing back. The FD tumor was 3 by 3 much larger than they had originally thought. We are waiting for the pathology report. I appreciate everyones support and prayers. I will keep you posted. We see the doctor again next month and they are going to do a full body scan MRI to make sure there are no other spots on her bones. Please pray for us that there are no more spots.