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Old 01-25-2005, 05:08 PM   #1
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froggy123 HB User
To those with Fibrous Dysplasia.

Hi everyone,

Iíve been reading a lot about what everyone has said lately about fibrous dysplasia. Iím a 17 year old female. I was diagnosed with fibrous dysplasia of the skull a few years ago. It is in my whole forehead, it has taken over my entire right frontal sinus and Ĺ-3/4 of my left frontal sinus, and it goes back past my foreahead on the right side of my skull. I have seen an ENT at the Hershey Medical Center who has monitored the fibrous dysplasia using a CT scan. Last time I went, the fibrous dysplasia had grown a little but nothing significant according to the doctor. He did say that my forehead may ďgo outĒ (I donít know the word) more than other peopleís foreheads but itís no need for concern. Also, the doc said to call if I notice any pain in the area, but never said what kind of pain. I get migraines which are typically on the upper part of my right temple or behind my left eye (only when Iím tired for this one). And then lately, probably for 3 or so months Iíve been getting pressure/a dull pain in the whole area of my forehead. Like if you put the lower part of your palm between your eyebrows and lay your hand (fingers spread) over your head, essentially where my hand reaches is where I experience the pain. And then thereís a spot in the middle of my head probably about an inch past the hair-line that hurts. Like I randomly feel a stabbing pain, I havenít noticed anything causing it to come on or go away. Itís also really tender to the touch at that spot. The doc told my parents and I that fibrous dysplasia usually stops growing once you hit puberty, but I first got my period when I was 11, and Iím 17 now. And most of you are older than I am, and are still having problems. Is this true that it usually does stop during puberty? Iím really scared that it will keep growing since itís so close to my brain. And since I really have no frontal sinuses, is that any cause for concern? Do they really do anything, or is it just air?

So anyways, Iíve noticed that many of you had bone scans when you were diagnosed. Is this a common next step after a fibrous dysplasia diagnosis? Iíve also noticed that some of you are on meds for the fibrous dysplasia, is this common? Is there anything else I should know? It just seems like my doctor is playing it down as though it is nothing. My parents are considering getting a second opinion in the spring (once things calm down at home), but weíre really not sure what kind of doctor to see?

Any thoughts/comments/stories to share would be great!

Thanks!
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Old 01-26-2005, 11:46 AM   #2
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annemv HB User
Re: To those with Fibrous Dysplasia.

Froggy,
I think we have posted to eachother before.
When I was diagnosed at 13 I was told it was a hormonal thing and I would grow out of it. They also said that the other two areas of growth that I had would go away or at least not grow any larger.
So now it is 18 years later and the area that was in my rib is gone (or else they just cant see it) and the other area in my arm has grown considerably. I can actually see the bone or whatever it is protruding out of my arm.
If I would have known that this could happen I would have had them remove the growth at the same time as my other arm growth. At that time they would have been able to remove the bad tissue and do a graft to fill it. Now, I have been told to see if it breaks my arm and then they will put a plate in. There is too much bad tissue to remove it.
So anyway, If I were you I would absolutely get a second opinion.
If you have growth in the skull that can affect your pituitary gland and cause problems.
I found my last doc by contacting NIH and I saw a bone disease endocrinologist.
Good Luck and keep us posted!
Anne

 
Old 01-29-2005, 04:43 PM   #3
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Join Date: Feb 2004
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froggy123 HB User
Re: To those with Fibrous Dysplasia.

Hi again,
My doc hasn't mentioned McCune-Albright Syndrome. Honestly, he pretty much played down the whole fibrous dysplasia thing - last time I went, the fd had grown a little but not much so the doc told me to come back in a year instead of 6 months this time. But, I think my mom has sort of wondered about MAS when she researched in the past. I first got my period when I was like 9 or 10. I also developed really fast. I had a breast reduction at age 15 with ddd/e cup. Went down to a large b, and now I'm back up to a large d 2 years later. Pretty crazy if you ask me! Talking about hormones though, I read somewhere that pregnancy can increase the likelyhood of having problems with fibrous dysplasia, like increased pain/growth. Would this be the same for birth control? I'm on the Depo shot, which kinda mimiks being pregnant from what my obgyn said.
Anyways, my parents are going to try to get a second opinion in the spring. Things are crazy here right now, as I'm going through a battery of tests to see if I have lupus. Crossing my fingers I don't, but it would explain a lot of things. I was wondering, the pain with growth, what does it feel like to you all? I'm trying to figure out if any of this pain in my head is from fd, I've had headaches/migraines/pressure in my head for so long that honestly, i thought it was normal to have pressure in your head for a long time until someone asked about it.

So thanks for replying..keep in touch!
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Old 01-31-2005, 07:57 AM   #4
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Location: Oak Ridge, TN, USA
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hrtofluv HB User
Re: To those with Fibrous Dysplasia.

Froggy,
Very curious as to what kind of doc you are seeing?! To put you off another year with growth?! And to not even consider MAS?! Who is doing the testing for lupus - some of these symptoms could be attributed to MAS?!
The precocious puberty (at an early age) should have made this doc automatically think of MAS when your tumor was diagnosed. Makes me actually a little mad when docs put their patients off when they haven't fully investigated what's going on!
And with you having more frequent headaches - I think it's time to switch doctors.
Have your mom read some of the posts here and have her read with you at ***** too!
And for the hormone issue - yes, there is some studies that have deduced that estrogen can feed tumors. So pregnancy and birth control increases your levels of estrogen and can feed the FD tumors.
Please keep in touch and let us know how things are going for you.
hrtofluv

Last edited by hrtofluv; 04-14-2005 at 10:57 AM.

 
Old 02-09-2005, 11:43 AM   #5
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Join Date: Jul 2003
Location: Oak Ridge, TN, USA
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hrtofluv HB User
Re: To those with Fibrous Dysplasia.

ucdcrush,
So sorry for everything.
I wish you the best.
hrtofluv

 
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